Load your quiver…

quiverA friend told me one time that life is war. It is a battle between good and evil a fight between right and wrong. If that is the case, then multiple sclerosis is a beefed-up war on Solu-Medrol AKA steroids. This situation means that you should not go into battle with just anyone by your side.

laughingYou should load your ranks with individuals who will help with no hesitation or haste. You want positive and understanding people to back you. You need cohorts who are unquestioningly positive and can turn a bad situation into a funny story. Your quiver should be laden with supporters who in the depths of sorrow can make you cry out loud from laughter.

friendsIf negative human impacts are money, multiple sclerosis is a very rich adversary. I know that this is a pessimistic way to look at life. Some might say that it is even an extremely cynical outlook on life. No matter if you agree with the theory that life is war or you think that it is “kittens and rainbows” one part is correct. You need good friends to help with the defective times and share in the excellent times.

In life you should not try to make it on your own as good friends make everything better.

A slow death…

aaaback in my dayWhen I was younger, I made fun of any of the elders in my life that would make statements of how life used to be. They might say something to the effect of “back in my day” or “when I was a kid.” However, now that I am more mature I tend to make those same comments frequently. So if you are an old person, you can laugh at this blog post, and if you are a young individual, you can roll your eyes as I did “back in my day.”

I was taught as a young boy the importance and value of a good handshake. “A man’s handshake is his word,” they said. I was taught to have a firm but not crushing grip while making direct eye contact. They told me “when shaking hands smile appropriately” reminding me that a pleasant expression comes across and means so much. The unwritten consensus seems to show that a proper handshake is at least one up and down movement of the clasped hands. Sadly, a person’s handshake does not have the same meaning of trust and honesty that it once had.

fistSince I have been in this wheelchair, I have seen the handshakes significance slip. I am sadly aware that its importance has been lost and the meaning has been debased and devalued. It has been reduced to only a fundamental greeting and in most cases dropped to a basic fist bump if not just a head nod. SIDE NOTE: I understand the necessity of the fist bump during cold and flu season I am not a monster.

fingertipWhen I meet someone for the first time, I reach out with an outstretched hand to signify this proper etiquette of a bygone era. Individuals who do not know me many times have given me the “fingertip” handshake. This practice annoyed me a little in the beginning because of my feelings towards “proper protocol procedures.” I soon realized that people who do not know me fear the unknown. These individuals do not know what it is that they do not know and in many cases, they fear a handshake with me and my wheeled brethren.

A friend recently introduced me to someone. I felt that it did not go as well as a first handshake does typically. She took my outstretched hand and rapidly did a half shake in the downward movement then let go. It felt as if it quickly turned into a cross between a half handshake and a “let go, man, I do not want to catch your cooties!” Did she honestly feel like that? I seriously doubt it, and that is why I said it felt that way.

handshake“Your word is your bond, and the handshake seals the deal,” they told me. Now it seems that your word and handshake no longer has trust, honesty, and faith to stand behind them. The phrase “my word is my bond” is now a punchline in a joke that brings comedy not conviction. I do not feel that this is limited to wheelchair users as this etiquette of yesteryear dies a slow death.

The only constant in life is change.

Visibly invisible…

I find it annoying when other people are with me in public. Let me explain so that you can see things from my point of view. It is not because I do not want to spend time with people because I absolutely do. My perfectly perplexing problem is that I quickly become invisible with others around. I have found that if I do not speak first, I get ignored like last year’s Christmas toys. Here are a few examples of stories so that you can understand my daunting dilemma. aaa invisable

My dad happened to be with me at the bank as I was trying to authenticate and then close a loan account. Right away it started with the banker ignoring me and talking directly to my dad. This attitude was after he explained that this was my account and he was merely transportation. I wanted to nip this in the bud before we got too far into the conversation. I quickly spoke up and said “why don’t you talk directly to ME about MY account? I live alone and handle my bills on my own like a big boy.” I tried to stay polite, but I had a slightly sardonic sound. I got a glance of surprise as well as a cross between a smile and a look of sympathy. However, I think that she finally got it.

aaa houseAt the inception of the house building process for my new home both my parents at different times drove me to the builder’s offices. I still had not said yes, and there were unanswered and unasked questions. Somehow the saleswoman had gotten my mom’s phone number and left a message with her voicemail. The sales rep was calling with some issues that were mine to answer. My mom did not return the call and simply made me aware of this perplexing problem.

I called the saleswoman back and recommended that she look at the application. I politely encouraged her to notice that neither of my parents had their names on the form. I made her aware that it was only my name on the paperwork stating that all questions should go to me. I explained that I would be living alone repeating that neither parent will be living with me. Then as respectfully as I could, I said: “again from now on please direct all queries to me.” I tried to hold it back, but sadly I had a slightly snide sound.

My dad had driven me around all morning, so I offered him lunch. We pulled into the Chipotle parking lot, and we went in and got in line. They were not extremely busy, so we did not have to wait long. I was buying so I went first. As I got to the cashier, she kept looking at my dad. I said that ours were together and handed her my debit card. She rang everything up and then started to give my debit card to my dad. I said loud enough that she was sure to hear “that is MY card that I just handed to you. You can hand it back to ME since I gave it to you.” My annoyance and frustration came out in an extremely embitter tone.aaa chipotle

I could stand on my soapbox and tell hundreds of stories like these, but I would start to sound like I was whining. The truth is that when in public the guy or gal in the wheelchair typically gets ignored. If I do not speak first, I tend to get talked “about” but not spoken “to.” Society is getting a little better at accepting the disabled in everyday life. Sadly, we still have a long way to go as individually people have a plethora of unnecessary concerns.aaa soapbax

Treat everyone including the disabled with the same respect as the CEO.

Not simply slight sadness…

aaa-depressionThere are many causes and degrees of this deep sorrow called depression. The source of depression can be anything like a medical condition such as multiple sclerosis and its side effects or symptoms. Postpartum depression can rear its ugly head to mothers soon after childbirth. A deep sadness after the loss of a loved one can be genuinely debilitating to one’s life for months after. These issues may seem like they have little in common, but they are far from dissimilar.

There is a stigma about depression that causes misinformation, and this lousy message gets spread like wildfire. Those who have or are currently going through some form of depression are not weak. Most times they feel alone and need friends and family to be there in their time of struggle. They need encouragement and given a reason to laugh, joke and to see that they are neither abnormal nor alone. I hope that this blog can help others do the right things to let these deeply mournful individuals know that they are loved and that depression is real.

aaa-holeThis guy is walking down the street when he falls into a hole. The walls are so that he can’t climb out. A doctor walks by, and the guy says “hey doc can you help me out?” The doctor writes a prescription throws it down into the hole and moves on. Then a priest comes along, and the guy shouts “hey father can you help me? I’m down in this hole and I can’t get out.” The priest writes a prayer throws it into the hole and moves on. Then a friend walks by, and the guy shouts “Joe can you help me out I’m down in this hole, and I can’t get out.” The friend jumps down into the hole, and the guy says “what are you stupid? Now we are both stuck down here in this hole.” And the Joe says “yeah but I’ve been down here before, and I know the way out.”

I have learned one simply supreme certitude in my years of multiple sclerosis. Having excellent mental health means you will likely have positive physical health and vice versa. To possess total vigor in your life, you need mind, body, and spirit working together in absolute harmony. Each one is like a cog in a motor so if one stops working eudemonia will cease possibly causing irreparable harm.

For me, my depression was a dark and lonely place causing me to become a recluse. Although I rarely had the opportunity to get out of the house the possibility periodically presented itself. When the opportunity arose, I always refused because I felt shame. I did not want to be seen in public and this caused my refusal.

Just as rare was the opportunity to talk with people. My social skills were limited because I was lonely, grumpy and bitter so I did not want to engage in conversation. I had an abrasive attitude that was relentless. When I look back, my loneliness bred this bitterness making people not want to put up with me. This personality made people avoid me as if they owed me money.

aaa-hulkI would say that to get through the hard shell someone needed to be there to hear my pain. Someone needs to be there more than once a month as this “on-again-off-again” friendship is not enough. This need is because that “once a month relationship” allows too much time to return to the anguish-filled hostile personality. If someone is there more frequently that Incredible Hulk acrimonious attitude will wear down and the calm Bruce Banner will return. aaa-banner

I should have been doing some exercise or any kind of regular body movement to preserve the muscles that I had. The problem was that I merely sat on the couch waiting for the end. I was eager for the conclusion of the closing curtain call but was not willing to deal with the self-completion consequences. At this point, I felt loneliness, shame, and coward-ess.

aaa-fitnessI only have anecdotal evidence to confirm my hypothesis on this matter. However, when I palaver with people that regularly exercise they reveal that they feel better soon after they begin their workout. Some individuals disclose that when they first got off the couch to start a training regimen, it was a challenging chore. During my “dark days,” I did not make my body move, and I deteriorated until my wheelchair bondage set in. All of this proves that a positive mind and body need each other like a rowboat needs a lake. Depression is a challenging topic because of the numerous degrees and forms of this severely somber sadness.

Be there for a friend in need and be a great friend indeed.

loser…

I said it in an earlier post that when you want to accomplish something, you need to think about it carefully. You need to decide how badly you want it and consider what you are willing to sacrifice to achieve this goal. Remember that most times in life there is a give and take no matter what situation you are involved in. However, with most medical conditions this choice can be detrimental to one’s health and well-being.

aaa weeblwobleDo you want fashionable athletic shoes or the hideous Velcro footwear? The favorite sports shoes are stylish, but it takes your fumbling fingers longer to tie them then Thanksgiving dinner. Do you want those spectacular high heels that make you look breathtaking along with that dress? Or do you want to stand without continually falling because MS weeble-wobbles we are not. aaashoes 2aaa shoes

There have been numerous losses in my recent MS life. I have sacrificed plenty to accomplish all of the swimming that I have achieved. I have lost the ability to stand and dress using the grab bar in my bathroom. I now get dressed on my bed while pulling, rolling and generally playing tug-o-war with my pants until they are on correctly. aaa tug o war

There are other battles that I seem to be losing as well. The first is between my feet and me as my outside ankle muscles are weakening by the day. This deterioration causes my feet to rotate upward when in a spasm or a tired state. I have specific exercises to aid my fight in this battle of one step forward and one step back. I suppose that the good part is that my feet are not getting worse. Sadly they are also not getting better.aaa feet

Secondly, my hourly leg squats routine has diminished significantly. I have great trepidation in doing these because of falls in the past. It is great that I live alone because when I do fall it is not in front of people. However, I will find a wife someday, and this solitary and secluded life of mine will change.

I would guess that this lessening of my routine is also partly due to the size of my new house. My new home is over 1500 square feet compared to my old house at 1000 square feet. Every point in my old house was extremely close to where I did my exercising as I did them in a central location. Currently, the place that I spend the most time and where I exercise these points are at a considerable distance from each other.

The definition of a loser is a person who losses. In this case, I know that I have lost some things and could technically be called a loser, but I have gained more than I have lost. My losses though significant have been well worth the sacrifice. At the same time, there have been several substantial gains as my body has become stronger. My new upper body power helps me with everyday tasks and complications that I face both expected and unexpected. Also, the emotional gains have been tremendous, and in turn, they too have been worth these losses.

If you do not sacrifice for what you want, what you want becomes the sacrifice.

No illness indictment this time…

I have fought with MS for nearly twenty years through an undeterminable tug of war. This major battle rages on as it leaves deep-rooted physical, mental and emotional scars with no care for me. Multiple sclerosis may catch me off guard or by surprise at times but I usually rebound much more quickly. However, in its world full of the unknowns and uncharted territories being occasionally flabbergasted is an absolute probability.

aaa top dogI say all of that to say this; the real shock is that multiple sclerosis is not always to blame for my disheartening debilitating dilemmas. This situation is not a fight over the territory of my body and MS reigns as Top Dog. I can and have been sick with other medical issues though they have been few and far between. Typically they have been minor issues, but the following story shows that sometimes extreme Non-MS cases occasionally arise.

I woke up on Tuesday, and something felt way off. It was like I had a loose wire and my brain signals were not connecting. I tried to turn onto my side to turn my alarm off causing a challenge of massive proportion. After five minutes that dastardly decision was done. My alarm finally was silenced. This issue again alerted me of some physical error that was causing complicated chaos.

The procedure that follows is typically a simple one as I shimmy on my back to the edge of the bed. I then smoothly sit up pulling on my bed covers to aid my rise before I do my fling and flop onto my chair. However, this day I was not so lucky. This time I was going to have a rude awakening.

I shuffled with great difficulty to the edge of the bed. I grabbed my bedcovers as usual and pulled hoping to again pull myself to a sitting position on the side of the bed. My muscles were excessively weak and I did not have the strength to pull myself upright. I continued to lie on my back at a perfect distance from the foot and head of my bed as to not allow me to grab the headboard or footboard. I fought for an hour rolling side to side trying to lunge myself upward and into a sitting position. I looked like a turtle on his back with no chance of recovery.aaa turtle back

aaa grmblingEventually, I realized that my stubborn, bullheaded ways could only take me so far. I decided that I needed to call for help, but this was in the daytime meaning that everyone was at work. Let me state for the record that I have never required calling anyone for help. As an independent, self-sufficient guy I never want to be that needy guy that people dread talking to. I never want people to see me approaching and dreadfully wonder “what does he want this time?” However, sometimes unexpected illnesses can eliminate all other options. Hopefully, the goodwill seeds that I have planted have grown enough to help win others over. Maybe others will be willing to overlook this new blemish on my record.

I texted a friend from down the street I knew that he was retired and hoped that he was home. He arrived a few minutes later and contemplated this confusing conundrum before him. Sitting me up would be easy but getting me into my wheelchair would be a difficult endeavor. After some struggle we had success as I was now sitting in my wheelchair.

Properly positioned, in my wheelchair, I was faced with the new struggle of self-propulsion. To depend on me on any typical day is easy though today is not normal. I could not tightly grip my push rims making pushing myself an arduous task. I slowly and carefully pushed myself into the kitchen and got some water. Thankfully my friend was still there so that he could open a protein bar for me of which I ate very little of by the end of the day.

He stayed with me for an additional thirty minutes or so. I explained that to eliminate the risk of a fall I would not move. However, just after he left, I spilled my water onto the floor, and as I tried to clean it up, I flipped out of the chair. At this point, my phone was on the table entirely out of my reach though I struggled to get it with no success.aaa no move

aaa cant get up[Then I remembered that I could make phone calls using my Google Home device and my voice. “OK, Google call…” I shouted. It asked me if I wanted to call his home or cell phone. We live in pretty amazing times so there was no need to own life alert although I had fallen and I could not get up. You have to be able to see the humor in everything in life.

He came back from his very short respite and was befuddled and bewildered by my new bearings. Sitting me upright in my bed was much easier than picking up 140 pounds of dead weight and putting it in my wheelchair. We struggled for several minutes trying to position and then reposition me and my chariot for the best floor to chair lift. Thank God he has a strong back as success came after ten minutes of this terribly torturous tussle.

My friend left again, and I did not move until another friend came to assemble some furniture that evening. I called 9-1-1 at about 6:40 pm when my other friend showed up. I imagine that he was pretty surprised because when he called to let me know that he was on his way, I used all of my reserves not to sound sick. After what seemed like forever the ambulance showed up and started to check all of my vitals and thus began the trip to my first hospital stay.aaa 911 2

Listen carefully to your body because it will not wait for you to hear it

The final countdown…

This is my latest blog for the MS Association blog website. I decided that I would save everyone time by reducing the needed clicks for anyone who is interested in reading it. This means that it is posted here and there is no need to visit https://blog.mymsaa.org/7-things-for-MS-independence/ to read it. The given topic was New Year new beginnings so sit back relax and read my twist on this MS topic.

We are in the time of year that we hear many top ten countdowns. These top charts rank everything from music to cell phones and from movies to kitchen equipment. Here are some of my own top things in my life. Of course, I will not be saying goodbye to these items unless something better comes along. As for these irreplaceable items in my life, there is a bountiful list and here are seven.

aaa-wheelchairLet me start with my wheeled chariot. Without this magical manual mechanism, I would be bedridden and merely be waiting for the end. It helps me to stay active by requiring me to propel myself from one place to another. It is essential to keep the body in motion, and my chair demands that I do just that.

My microwave helps me to keep my independence. This programmable product provides by allowing me to cook the sustenance that I need to stay alive. I also do not have to stand above it to peer in, meaning that my microwave cooks at my eye level. I have even figured out how to cook dry pasta and not merely reheat it. I love spaghetti.

My smartphone and internet banking are essential for keeping my self-reliance. I am a private person with problematic penmanship. Internet banking eliminates the need for check writing to pay my bills. It also means that I do not need to wait for my monthly statement to verify my banking activity. aaa phone

My computer and smart technology are both paramount to my true freedom. When connected to my smartphone or computer all technology that I use can be activated even from a distance. It also makes these tasks simple to complete. Wi-Fi connectivity means that I can be anywhere in the world as long as there are internet and Wi-Fi.

aaa musicMusic of all genres is vital to my total well-being. With no music the silence of my house is deafening. As I roll around my house, I do not merely want to hear the noise of the television. I enjoy the rhythmic and melodious sounds of music echoing throughout the halls of my house.

The community center swimming pool and my swim instructor are imperative to my life. The pool has made me a stronger person both physically and mentally. This strengthening ensures that my daily tasks are possible for both brain and body. My instructor taught me how to use the pool fitness equipment to build the muscles that I depend on daily.aaa-pool

Although not things, my “fortitude and tenacity” are fundamental to my existence. My attitude and ability to “adapt and overcome” the adversities that are before me have made me a better person. It has made every breath that I take exceptional and worth having.

The above is a list of the “top seven” things in my life. These are just a few of the things that I cannot live if I did not have in my life. As you can see if any one of these items were not in my world it would be much more laborious and burdensome. As we enter into the New Year, we have many new and exciting opportunities. Are you ready?

Find the things that can jumpstart your journey to the independence that you deserve.

*Scott Cremeans lives in Central Ohio. He is a US Marine who was diagnosed with RRMS in 2001 at the age of 27. Scott has successfully managed his MS symptoms on his own with his faith, friends, and humor. You can read more about his MS journey by visiting his blog http://www.myramblings.blog where he muses about life in the slow lane with his literary wit.

SORRY FOLKS…

To the readers of my blog:
I am sorry that I did not post this past week, but I was ill -to put it mildly- and in the hospital for four days. I do have MS but funny enough it was not the cause of my time of torturous trauma in the hospital. I foresee a blog or two coming out of this pondering and perplexing puzzle. I do have a new post ready for posting on Monday or maybe Tuesday. I hope that life is treating you all well.
Scott

The strengthening…

It is unquestionable that I have had a few challenges and struggles as of late. However, I can tell that my arms are getting much stronger. Movements that used to take me extreme amounts of energy now happen exceptionally quickly. My legs still spasm shaking like a leaf in a windstorm, but my upper body is getting stronger by the day.aaa strong arm

I used to have a tough time transferring into and out of a sedan. I simply did not have the correct muscles to make it happen without great struggle and help from others. My wheelchair and the passenger seat were at similar heights. I still could not get close enough to make a smooth transition. The lack of closeness is due to my chair being longer than most causing the distance between seats to be nearly a foot. Without the needed muscles to transfer that gap might as well be The Grand Canyon.

A friend and his wife recently picked me up for a group dinner that we were attending. They have a small sedan loaded with vegan leather upholstery. For my abilities, I try to avoid cars with any form of leather when I can. These leather surfaces for me tend to be slicker than a wet bar of soap covered in Vaseline.

When they pulled into my garage, I came out of the house as jovial as usual. I angled my wheelchair next to the passenger seat and pulled as close as I could get. Using my hands, I placed my feet precisely positioned for proper posterior propulsion. aaa footplacement I launched my derriere onto the passenger seat with extreme accuracy. This point is when the slick seating surface can become a problem. I use my hands as a brace yet this slippery material causes my hands to slide out from its bracing position repeatedly. This last part would take several minutes, and I did not want anyone to have to wait on me. My friend at my request simply grabbed my legs one at a time and placed them carefully into the car. I then belted myself in and away we went.

aaa chair 2 couchWhen my wheelchair is at a higher elevation than the seat that I am transitioning from is when the real struggle begins. Transferring from my couch was one of those terribly turbulent times. Not to mention my chair has to sit perpendicular and not parallel to the sofa. Both of these situations make a transfer trickier than catching a magician when hiding the rabbit. However, as of late this couch to chair movement is more straightforward than first-grade math.

The last sign that I am getting stronger that I will talk about in this blog is my speed. Now when I swim laps, I move faster and farther and can hold my breath longer than ever before. I swim faster and can get to the other side quicker.

I thought that after my swim challenge to raise money was over I would stop swimming laps. However, I now swim laps for the health of it, and I am thrilled that I keep it up. I bought myself a pair of webbed swim gloves and have been swimming harder ever since that purchase. The resistance of the gloves in conjunction with my pushing harder has strengthened my upper body tremendously.aaa swim gloves

As you can see getting a stronger upper body is the name of my game. My new water training is as follows: thirty minutes of trying to move my legs as much as possible. The next thirty minutes I spend swimming laps and doing several weight-bearing squats. The following half hour I do mild leg movements as well as rest. Then it is time for fifteen minutes of designated disciplined dumbbell drills. Lastly, I participate in the water fitness class for the last forty-five minutes. My fitness routine lasts for two and a half to three hours.

Perseverance is failing 19 times and succeeding the 20th

Adapt and overcome sport style…

Adaptive sports have become very popular. We have come so far in technology that what was once impossible is now possible. Great minds have gotten together and figured out how to make things work correctly specifically for the disabled. We have all heard the line “there’s an app for that.” Now it seems that we can say “there is an adaptation for that.”

aaaa-hand cycleingAdaptive sports include things such as surfing, kayaking, skiing, skydiving and more. It was explained to me that no matter your talent level and abilities you can ride a bike with a handcycle. Not only can you kayak but if you have the needed skills, you can whitewater kayak. If you are willing, it is not out of the question to snow ski in Colorado with the best of the best. For all of these sports, you are limited only by your willingness to act and what the imagination can create.

I was told about adaptive sports several months ago. Then I recently put two and two together and realized that I am bored, lonely and shy. My shyness causes me to mess up every time that I have met single women. A great way to hopefully change that is to put myself in a situation that does not allow me to be introverted. These environments, where I need to depend on others, encourage me to communicate and interact with other people present. They force me to step outside of my comfort zone and enjoy the companionship of others. aaa-skiing

In my research on adaptive sports, I found that a person can travel all over the world to indulge in these athletic challenges. Every country seems to have their famous place to kayak, ski, or even bike ride. However, I will stay close to home as I do not have the “travel the world money” that is needed nor do I want to travel alone.aaa-kayaking

I was not comfortable in the water when I began water class nearly four years ago. I felt unsure of myself and unstable until my latest instructor began to encourage me to do more little by little. I started by clinging to the pool wall like saran wrap. Now I swim laps with no flotation device, and I feel incredibly comfortable in the water. I still need a noodle when doing standing exercises as my legs are as sturdy as cooked spaghetti.

It is incredible how things are connected. I have talked before about “the knee bone is connected to the…” That song can be used to explain all aspects of life. My fear of the water when I started caused my trepidation when attempting anything new. I am now so comfortable in the water that I do not even think about “going under.” The few times that I have made mistakes, I did not panic and recovered with ease.

This evolution of my skills reminds me that “practice makes perfect.” So no matter if I am kayaking or hand cycling the more that I do it, the more comfortable that I will get. It seems so obvious because it is that simple.

I feel incredibly comfortable in the water my next step seems inevitable. My next logical move is to track down a place to learn to kayak. I did a lot of research including watching several videos on Youtube. Let me tell you that those wheelchair users do some spectacular things in a kayak especially in whitewater. The major obstacle that is currently in my way for this new stage of my life is transportation. There are no kayaking destinations that I know of where I can take COTA Mainstream. The other puzzling question is will they allow a kayak on the bus?

It does not make sense to buy any of the needed equipment yet. The significant cost will be the kayak itself as a decent kayak will cost nearly a grand or more. Then there are the mid-priced items like a helmet, life jacket, and the paddle. I am sure that I could find a cheap helmet and life jacket at many stores. However, these items will be protecting my life so I must spend wisely when it comes to these items. Lastly, I am sure that there are probably small ticket items that I do not know of yet.

aaa-surfingI have always said: “do not tell me that I cannot do something.” With time and effort, I will find a way to make them happen. I was challenged to do a 5k in my wheelchair, and even though others doubted that I could, I succeeded. Some said that I could not do three miles of swimming yet I swam eight. There may be obstacles in your path, but you decide to allow them to stop you or not. The question becomes how badly do you want it? How much are you willing to sacrifice to accomplish the goal?

Do not let life limit you. Find the adaptations that will make you live better and make it happen.