I stumbled upon this blog in my search and I am intrigued and think you should be too.
“Always remember to slow down in life; live, breathe, and learn; take a look around you whenever you have time and never forget everything and every person that has the least place within your heart.” ~ Unknown
The other day while leaving Yoga, I noticed I was, once again, the last to leave the class. I told my teacher that it was a gift of MS that has caused me to take my time and relax. It’s not that I am physically incapable of moving quickly. I was always a darter, always rushed around and still could if I chose to. I know that after Yoga I am very relaxed, I can just meander my way through the act of refolding my blanket, replacing my blocks, rolling my mat. For some, moving quickly may no longer be an option, but that is not necessarily a bad thing. My very wise daughter shared this video lecture with me, and I feel compelled to share it with all of you. I wanted to post it this morning but I had an acupuncture appointment, so I didn’t have time; how ironic. My Chinese acupuncturist, Dr. K, was talking about her upcoming Tai Chi conference, and said something so strangely coincidental, I couldn’t wait to come home and write it all down. She told me that she starts her conference lecture by posing this question, “How long is the life span of a dog? How long is the life span of a tortoise? We can learn a lot from a tortoise.” Please accept this gift.
As fall approached, I was debating whether or not to join a gym. I thought maybe I could try spin classes seeing that I had been biking all summer with relative ease. I was a little bit intimidated with going to a gym in my “condition.” It’s not that I was self conscious about my appearance; I appear fit. It’s just that I was feeling self conscious about going to a gym while having MS. I had always been a regular participant in group fitness classes such as step aerobics and Zumba, but I was used to being in the front row. I now felt as though I needed to be relegated to the back of the room, perhaps near the exit, or at least the rest room, should I suddenly need to step out. I didn’t want to be the kind of person who “steps out.” In researching my options, I came across what looked to be just the thing for me; Pilates with a personal trainer. It sounded expensive because, well, it was expensive. But I found the least expensive of the expensive trainers and boldly made an appointment. I was very excited at the prospect of exercising like the stars! Core fitness sounded very appealing. Maybe I could wear a bikini this summer. I figured that this might be the last opportunity to really get a Jennifer Aniston body, not just because of my MS, but also because of my age.
I loved Pilates and the personal trainer immediately. I could do this. I wasn’t the strongest I had ever been when I started, but everyone has to start somewhere. The Pilates machine looked like a torture device, with all it’s pulleys and straps, but it wasn’t torturous at all. Having a personal trainer was great too, because she encouraged me to keep going when I may have otherwise wanted to stop. At the same time, she was always mindful of my personal abilities, to be sure I wouldn’t injure myself.
On my first day I scheduled twice weekly appointments straight through the next three months and I kept them all. I would prepay for both days on Mondays (my idea, not hers) so that I would feel obligated not to blow off my next scheduled appointment. It was all my own personal strategy to stay the course and it seemed to work. I stuck with it for the full three months, and felt really strong and energized. Sadly, as December approached, the well was running dry and I felt compelled to take a break. It’s February and I still haven’t gone back, but maybe that wasn’t my last opportunity.
The spring before I was diagnosed, my husband bought me a bicycle for Mother’s Day. I had been experiencing numbness in my feet and legs for several months and all my previous forms of exercise gave me an uncomfortable electrical sensation. I would get a strange feeling from the tips of my toes up through my groin whenever I tried to do anything that involved foot to ground impact. Riding a bicycle did not cause any such symptoms. Zumba and Step Aerobics appeared to be activities I could no longer participate in. Rather than dwell on that which I can no longer do, I now focus on the fact that I have rediscovered the joy of riding a bike. I have been riding since.
If you haven’t ridden a bicycle in a while, I highly recommend it regardless of whether or not you have an MS diagnoses. Physically, it’s a great no impact aerobic work out that has a wide range in terms of how physical you want to make it. Mentally, besides the usual production of endorphins that exercise brings about, it is an activity that simply makes you happy. There is something charmingly childish about riding a bike. Most of us learned this never forgotten skill when we were about 6 years old. And when I hopped on that saddle after years of not having ridden, I was instantly hooked. We mainly ride on bike paths and the ones near where we live run along either the river or the ocean; both are amazing. Even on the warmest of summer days, the breeze is created by sheer momentum. This winter we have had milder than average temperatures and were able to sneak in a ride or two in December and January. Hills can be tough; hills are a challenge for any rider. We have learned the best points of bike path entry which affords a down hill start, thereby energizing and invigorating you from the get-go and then gives you a strong aerobic finish at the end of your round trip.
There are two stories which inspire me and make me believe that cycling is available to people with a wide range of abilities. The first is Terry Wahls’ TEDxIowaCity Minding Your Mitochondria lecture. Interestingly, when I discovered Terry Wahls’ viral video, I couldn’t help but notice that Dr. Wahls described how she went from a wheel chair to biking to work after changing her diet. I doubt that Dr. Wahls ever considered becoming a runner as her mobility returned, but she found that she could ride a bike as she rehabilitated. This life changing video inspired many lifestyle changes I have made as well as reconfirming my cycling theory.
My friend Hope, the woman I met on that fated flight from Arizona, is plagued with moderately advanced symptoms of MS. When I met her, one of her hands was unusable, she had a leg brace and used a cane. I followed her off the plane as she painstakingly made her way towards baggage. In one of our email exchanges, I told her about my bike riding and a few weeks later she emailed me and told me she had purchased an adult sized tricycle. She was thrilled. She spoke enthusiastically about the fact that she felt like a 5 year old girl, riding her trike through the park near her winter home in Florida. I have a feeling she hadn’t felt so alive in years. Hearing this brought me such joy, nearly as much as riding.
This video inspired my perspective. I really hope it inspires yours as well.
Multiple Sclerosis is a condition for which there is currently no cure but I am convinced that the way we perceive a situation has a direct correlation with how we experience it. I’m not certain who to give credit for this often heard affirmation, but it has been said that “Attitude is ten percent experience and ninety percent how we perceive it”. The common experience amongst people diagnosed with MS is obviously the MS, the perception, and how it is dealt with, is then up to the individual. In Professor George Jelinek’s book, Overcoming Multiple Sclerosis, he discusses Connecticut surgeon, Dr. Bernie Siegal’s findings that the people who have recovered from serious illness, looked at the condition as a challenge and an opportunity for personal growth. “They tackle the illness actively, rather than being passive recipients of doctors’ treatments.”
The next series of entries will be based on how I perceive my diagnosis and the anecdotes I share will hopefully inspire others to change their perception and experience a feeling of empowerment.
I should have titled this A Year of Revelations, because it has taken most of the year since my diagnoses to tell my family about my MS. I have only, in the last two weeks, told my mother and sister. My children were told in a span of about 8 months. Two out of three of them were living far away from home until May of 2011. It didn’t seem appropriate to tell my then 14-year-old, without him having his siblings around to share the burden of knowing. What I really wanted was to spare everyone the burden of knowing. I felt as though my parents, both in their 70′s, would likely never need to know in their life time. I have lived my entire life trying very hard not to disappoint them. I knew this would be an unnecessary crushing blow to them and an unnecessary worry. If I ever were to progress to a more degenerative stage of this disease, it’s likely to be very far down the road after they both have passed.
It was decided that I would pretty much keep it a secret until at least the return of my family. I did tell a handful of close friends partly because it’s easier to tell friends than family and partly because I guess I was practicing “the conversation.” I was sure to tell them that it wasn’t public knowledge, I didn’t want my family to hear it second-hand. It was always very awkward to bring it up. When you start the conversation with “I’ve been diagnosed” they brace themselves for the worst, thinking you are surely going to reveal that you have terminal cancer and they seem relieved that it is only MS.
My children arrived home in May and I planned to have a family meeting. Before I had a chance to do this, two things occurred. One was that my daughter, my oldest, found my stash of drugs in the refrigerator while reorganizing it late one night. She confronted my husband after googling Copaxone. The two of them had the conversation I had planned to have with everyone. I wish he would have had the opportunity to talk to all of them without me. I was actually hoping my daughter, who isn’t exactly great at keeping secrets, would just tell the boys and spare me the difficult task. The second thing to happen that May was my son’s very close friend died in a car wreck. He was already in a less than optimal place mentally. Having just had a stressful semester away at school (broken hand/surgery, dropped classes), he was preparing to transfer closer to home and wasn’t particularly happy about it. After his friend died, I certainly didn’t want to add anymore distress to his life. He was already spiraling towards a deep depression and so I put off telling and focused on helping him heal. This resulted in also not sharing the news with my youngest son. I felt that the oldest to youngest hierarchy of disclosure needed to be maintained. Finally in August, I told my older son. He was concerned, but I breezed through my spiel about awesome medication and that I wasn’t symptomatic and it seemed to ease his mind. I was, however sure to tell him that stress plays a major role in relapses. Anything to try to snap him into being a less stressful component in my life. It would be months before I got the nerve to tell my youngest.
We eventually had an afternoon together Christmas shopping in early December and I brought it up on the way home. He was quiet, but then again he is always quiet. He just asked one question, “what’s going to happen?” I told him that nothing was going to happen because they caught it early and I am on very good medication. He seemed satisfied with that. I try to be as well.
I was, and still am very good at keeping it light. After all, the worst case scenario with this disease is only a possibility. I’ve even nicknamed it the “Might Suck”. And in keeping with the spirit of optimism, for every “might”, there is also a “might not” and this is where I am leaning.
Today marks the one year anniversary of when Dr. F delivered the “likely” diagnoses to me. I still need to tell my father.
I left the MS center on that day in April with a big packet of information about what was going to be my drug of choice. In the days that followed, I was contacted by a representative from a company called Shared Solutions. They are apparently employed by Teva, the manufacturer of my weapon. I was about to become armed and dangerous, ready to go to battle against my enemy, my foe; multiple sclerosis. I weighed my choices carefully, Copaxone, Avonex, Betaseron, Rebif, Gilenya, Tysabri, Novantrone, the names all sounded rather innocuous, like teams on the reality show Survivor. I chose Copaxone, which has been available since 1997, and seemed to have the least side effects. Only Betaseron and Avonex have been available for slightly longer. It’s a once daily subcutaneous injection. I wasn’t sure how giving myself injections would be but I wasn’t nervous about it. Shared Solutions was going to arrange home delivery through my insurance, as well as send a nurse to my home to teach me how to inject myself with an autoinjection device, the autoject. This was sounding better and better. I would get to use an automatic weapon. Some of the medications had a less difficult mode of delivery. Gilenya is an oral medication. That seems like a logical choice until you see that it’s only been available since 2010. I am not a gambler; I didn’t even consider it. Besides what can be more satisfying during a battle than pulling the trigger on your enemy? The most common side effects listed in my glossy Copaxone brochure was injection site reactions such as redness, itching, pain, swelling and a lump. In the Gilenya packet, I saw side effects like slowing your heart rate, lowering your number of white blood cells, blindness and hair-loss, to name a few. With Rebif, common side effects included flu like symptoms, depression and liver problems. Every other option sounded really scary to me, while Copaxone sounded scary mostly to the MS. Sure there was a list of undesirable “rare but possible side effects” included in the fine print, but I felt pretty good about the science behind this one. The way Copaxone works is that it stimulates a “protective immune response” by promoting the development of T cells in the central nervous system. The immune system then attacks these propagated T cells rather than attacking your body’s nerve cells (myelin). Brilliant! Shared Solutions scheduled the delivery of my arsenal and I was very excited the day it arrived in a giant box containing a styrofoam cooler and three months supply. I had to sign for the package because it contained $12,000 worth of weaponry, (war is expensive) 90 pre-filled syringes that needed to be kept cold. Copaxone takes up a lot of space in the refrigerator, but I was determined to not let it take up a lot of space in my head.
On the day my diagnoses was confirmed at the MS center, I was whisked in to see the in-house psychologist. I was feeling rather anxious and teary but none of it felt related to the MS diagnosis. My son was having hand surgery 2,400 miles away on that very day, April 6th 2011. In the time between my visit with him and my appointment, he had broken his hand in a snowboarding mishap in Colorado on his Spring Break. I was also just recovering from the worry I had been carrying as my daughter traipsed through Morocco for hers. I talked about his surgery rather than my news and partway through our conversation the psychologist asked if he could go put money in the meter. It was slightly surreal. I didn’t have the time or energy to deal with this when there was so much going on with my son. To say it took away from the emotions I may have felt due to the diagnosis wouldn’t really be fair because I really don’t know how I would have reacted had I not been so preoccupied. Maybe it was a blessing in disguise that I had so many other worries that were outside of my own personal situation.
After what was my first and what became my only “session”, I was waiting to schedule my next MRI and follow up appointment, when I found myself reading the scrolling trivia with a new found interest. The screen asked, “What movie featured a famous cellist who had MS?”. The answer was “Jackie and Hillary”. I made a note in my phone so I could remember to check it out. I should have just ignored it, and if you ever watch the movie, you will agree. Actually, please don’t watch the movie. In the film, the life of Jacqueline Du Pre, the famous English cellist, diagnosed with MS, was portrayed. One would think that an MS center would perhaps recommend a movie with a story of hope and determination. Well this movie was the antithesis of what a newly diagnosed person needs. It was the single most depressing movie I have ever seen despite my diagnosis. It showed the talented young woman’s devastating and frankly humiliating decline as she quickly progressed from relapsing remitting MS, diagnosed at age 28, to secondary progressive. She died at 42 in 1987. Once I got out of the week long funk that the movie caused me to fall into, I emailed my MS specialist to ask her to take the movie off the trivia scroll. She said she had never watched it but would be sure to have it removed. That they were referring a movie that had not been previewed which contained such a sad, scary prognosis to MS patients so nonchalantly just seemed so irresponsible to me. Maybe I’ve just become too sensitive.
“April Comes She Will”- I have always loved that Simon and Garfunkel song and it played in my head a lot in the weeks that followed my referral to the MS Center. When that April day inevitably arrived, my husband and I left at the crack of dawn to drive the hour and a half to my appointment. We arrived about an hour early but that was fine, we didn’t know if we would hit traffic. I was oddly excited. Was I giddy because the day I had been waiting for, no matter how scary, had finally arrived? Was I in sheer denial? Or was it the relief of finally being diagnosed? I can’t say for sure. While I waited to be called, I watched the people come into the waiting area. One man had a cane, a woman was pushed in on a tilt recline wheel chair, another came in with a preschooler and presumably her husband. I was a little distracted. There were several flat screen TV’s with MS trivia scrolling. Who ever heard of such a thing? I wasn’t reading it but I kept looking at it. When I was finally called, my husband asked if I wanted him to come in. I declined, though in hindsight I wish I had said yes. The MS specialist didn’t look a day over 25, she had to have been at least 30 though right? We sat down and the conversation immediately went in the “definite” direction. It was clear that she wasn’t here to decide if it was MS, rather she was here to treat that which was already diagnosed. I hate being the last to know. Maybe I really was in denial. She examined me and our conversation turned to Disease Modifying Drugs to control my relapsing remitting multiple sclerosis (RRMS). I had read everything I could find about MS before the appointment so obviously I had already researched the various options she laid forth. In a matter of minutes it was decided that Copaxone was my drug of choice; strangely enough I knew that would be the one before I had even gotten there. Copaxone is a daily injectable, which sounded a little scary, but seemed to have the least side effects. It was going to be fine. I explained to my husband over lunch afterward, that my miracle drug was going to trick my immune system. The medicine was going to create fake T cells for my over active immune system to attack thereby sparing my myelin sheaths. Better living through modern chemistry. I was extremely stoic. That evening I cried for about three minutes when we went to bed. I told my husband I was scared. It was a rare show of emotion over this as I have been extremely calm and optimistic for most of the year since that day.