MS has kicked my ass this year

It really has….This is the first time since my diagnosis that I have felt this defeated and broken.  Because of this experience, I can now relate more closely to those people who have been broken much earlier in their experience of this disease. 

 

I did have three good years of mobility after being diagnosed, but because my gait had been so compromised, I had worn all of the cartilage of my right hip and had none left.  I was in constant pain, and after receiving two medical opinions, opted for a Birmingham hip reshaping operation in November of 2007.  I was told that this procedure would be less intrusive than a full hip replacement, and is typically recommended to people who are under 60 years of age and not overweight. (This was the first time in my life that I have been told by a medical professional that I was “thin” and “young”.  I flattered….until I learned that most people who need this procedure are either over 65 years of age and/or obese…so much for that “compliment”!)

 

I went under the knife in November of 2007, and the pain I was experiencing went away in the recovery room.  My initial therapy went well and I left the hospital after 2 ½ weeks with a walker.  It is now December of 2008 and I am still using a walker, sleeping on my side with extra pillows between my legs.  I still have a hospital commode next to our bed because I cannot make it to the bathroom quickly enough on my own power without peeing on myself.  (Having no muscle control will do that to you….)  I have not been able to work for the past year.  That is huge for me personally and impacts my entire family, as we do not have the money to do many of the things we are used to doing – a major issue for me personally, but it has seemed less of one for my husband, who alternately has been described by my friends as a “saint”, an “amazing partner”, and “a wonderful man” (Do you ever think that your friends often have a better appreciation for your spouse that you do?…)

 

We have come to believe that the procedure, combined with a need to come off of my MS meds for several months, touched off a major relapse, which has been a bitch.  As a result, my children have lost their heretofore physically active mother (and their “room mother” at school), my spouse has had to take over all of the family-related things that I have been handling over the past 14 years, and my friends have had to help me do everything from go to the bathroom (oh my God – you have holes in your underwear too!) to build and use a scooter to go to shopping or to lunch.

 

The resulting redefinition of all of my relationships has definitely come at a price.  Several women who I considered to be my close friends for years have vanished – unable to fulfill the changed requirements that friendship with me now entails.  Thankfully, in their stead, several other women have moved from the outer limits of my life into dead-center, and for that I am eternally grateful.  Some family members too have disappeared from regular contact.  This has pushed me to learn how to really forgive, forget and move forward happily and without regret (still a major challenge for me…).  This has been challenging on many levels, but I am working it out (more on THAT later!)  My own image of myself as a powerful, independent woman completely in charge of her destiny and physical activities has had to change.  My work-life and identity have also been dramatically affected – I have not worked for pay since the operation…something that is challenging my ego as well as our family budget….and I have been someone who has defined much of myself by the things I am compensated for – a major mistake that many people make even without the wake-up call of a serious health problem. And one I should avoid like the plague since I have been an executive recruiter counseling professionals about this identical point for 20 years….

 

One good thing about MS

One of the good things from my diagnosis of Multiple Sclerosis (there are a few!) – it led to my getting involved with the National Multiple Sclerosis Society in a variety of ways.  The Women Against MS Luncheon (now called MS Women on the Move) launched locally in 2005, and I attended the initial launch.  I was so impressed that the next year I became a member of the planning committee.  In 2007 and 2008, I had the fortune of co-chairing the luncheon — a wonderfully empowering experience.  Every year the luncheon has been increasingly successful, and I am very proud of my involvement in this wonderful activity.  Each year 500 (in 2005) to 800 (in 2008) women come together for a delicious lunch, great entertainment, and to learn the latest research information about MS, its causes, treatment and potential cures.  Not to make a commercial (!), but this is one way that I have opted to manage my own feelings about this intrusive disease, and to engage in helping to find a cure.  If you or someone you know would be interested in this activity, check it out online through the National MS Society (www.msandyou.org)

 

I recently learned about a dear friend’s cousin who has had MS for over 25 years.  She is over 60 years old, lives in NYC on her own, and over the years has received a significant amount of support from the MS Society.  She has accessed resources that I was not familiar with: monthly house cleaning, regular rides to her doctor appointments, and other assistance – things I had not known were available despite my earlier involvement with the Society.  I have struggled with how that could happen, but now believe that it is mostly my own fault.  For the first two years following my diagnosis, I was physically able to get around on my own, had no real handicap to speak of, and did not need much (any?) direct assistance.  Now, things have really changed for me and my family, and I need a lot more help.  This is incredibly difficult for me.  Before – even with the disease, I was a hard-charging, self-sufficient dynamo, an active co-leader of my family and a person whom many of my friends sought out to answer questions about the latest places to go and things to do.  Think of a “Sex and the City” type of girl.  This past year has brought that image crashing down.  I have heard that the disease can take many turns and be quite unpredictable, but I really had no clue.  I cannot walk without a walker, have difficulty climbing the stairs, and cannot drive my car.  The answer to my prayers is taking a lot longer than I ever expected.  I have recently renewed my hope that my answer is coming…. 

MS and missing my Dad

Three months after I was diagnosed with Multiple Sclerosis, my elderly father passed away due to complications from Alzheimer’s disease.  I am still reeling, three years later.  As the middle child of four, and the youngest daughter, I was always close to my wonderful father.  He was a great provider, a wonderfully soft place for my two brothers and sister and I to fall all of the time, and a great example of a distinguished and loving husband and father.  I miss him terribly.  Many friends ask me when I finally came to grips with losing him.  My response is always “I will let you know.” 

 

Dad’s 86^th birthday would have been Dec. 11, so he has been on my mind a lot these days.  One other thing to add about my father that resonates for me since my diagnosis – he was handicapped.  He contracted polio as a young child in rural Mississippi – one of the last victims of the disease before the vaccine was available.  He was the youngest of 5 children born to an itinerant preacher and his wife in 1922, and the only child that was able to graduate from undergraduate school. 

 

My father applied to medical school after completing a double major in Math and Physics at Morehouse College and earning a degree in Pharmacy.  After running a pharmacy for several years, he decided that he was interested in attending medical school.  At that time in the US, black students were not admitted to many schools in the South.  If they did get apply, the State paid for them to be educated at another school – usually a HBCU.  My father applied for and received the financial support to attend Meharry Medical School.  He then went on to earn a degree in Psychiatry from University of Pittsburgh.

 

As you can tell, my father was a strong, bright, amazing man.  He worked hard every day of his life, and provided his family with a phenomenal life where we wanted for nothing that I can remember.  Daddy’s example continues to be a major inspiration to me.  I know what it is like to be the child of someone who is physically handicapped, and I hope to be half of the example to our kids that he was to us growing up.

The gift of Multiple Sclerosis

Since my diagnosis in 2005, many people have spoken with me about “the gift” of MS.  There are times when I just do not want to hear it.  This illness has changed most of my relationships, led to my losing over 50 pounds, dramatically impacted my self-image, my standards for myself and my ability to make any money, and led me to cut my hair the shortest it has been since I got married 14 years ago.  (After having a weave for over a year!)  In short, it has changed my life on every level – dramatically, fundamentally and completely.

 

And what is the message I try to take from this?  I am still working on a well-developed, robust theory, but to put it bluntly, shit happens.  This may not be what you want or even need to hear right now – and I never thought that this would represent anything that I would come to understand about my own life.  But this is what I have come to understand – we are all very blessed individuals.  The level that we know and understand that is very important, as it will come in handy whenever – and every time – the shit hits the fan.  I have been a very protected woman over the past 50 years of my life.  Not much has happened to me that could be considered negative or difficult.  Not too many missteps (a few, but not many thankfully!).  That alone is a tremendous blessing that looking back I should have appreciated even more than I ever did.

 

As a practicing Buddhist (since 1984), I have come to accept that the challenges of life must be appreciated for all of their ebbs and flows.  No matter how bad it looks from the outside, within every challenge or obstacle is an opportunity to develop yourself further to become even more of the person you are here to be.  I know that each one of us has a very special mission – which is why we are here on the earth at this time – one that only we can fulfill.  We are here to navigate the challenges successfully and make it happen.  My main challenge this time around is this damn MS.  There are times when I curse it to the skies, and cry my eyes out with sadness, disappointment and fury over the daily pain through which I have been forced to navigate.  Who ever knew that I would need to learn how to inject myself with medicine every day?  That it would one day take me 11 minutes to get down the 14 stairs from my bedroom to the first floor of my own home?  That a whole year would pass without my being able to attend any events at my childrens’ school – not even field trips?  That my 80-year old mother would push ME around the mall like I pushed both my kids during the first few years of their lives? 

 

SO much has occurred since my diagnosis.  My thinking about it has evolved over the past three years, and I think I have a lot to share.  I hope that you will come back and read some of what has happened to me – share what has happened to you or others that you know who have dealt with the potentially life-changing diagnosis of multiple sclerosis.  Let’s build a community of folks who have come together because of the reality of MS in our lives.  Let’s share what has worked for each of us and what has not – hopefully we can learn from each other….