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….

My Book Is Coming!

Hi everyone,

I am very excited to share that my first book – Diva on a Detour: 10 Years Along my Journey Through Marriage, Motherhood and MS – is due to be published this spring!  Stay tuned!!!!

This is my last entry in this blog…..

Please check out my other blog – on this same site – http://www.divaonadetour.wordpress.com
Thank you so much!!!!

Single parenting when your wife has MS

I have noticed that the best time in the day for me to get messages and inspiration from Spirit is right after I have awakened, but before I have begun trying to get physically moving. 

The ideas, messages and insights that I get at this time are often quite inspirational and make good sense.  I have had realizations about my family, my marriage, some friendships (which to leave alone and which to persue), and whether to try to keep working on my own or file for disablity.  Each of these messages have come to me like a lightning strike — in the midst of moving down the hallway between my bedroom and the bathroom.

I had two of them today; one about my husband and one about the best way for me to deal with/face the current overall status of my health.  This is about the first one; I will write later about the second one. 

In the midst of my physical challenges, I am limited to watching as my husband takes our daughter to her basketball practices and games (in two leagues!), Junior Girl Scout activities and her slumber parties, and our son to his basketball games (one league thankfully!), birthday parties, Boy Scout activities and camp-outs (he’s a patrol leader), not to mention school every day.  Because my husband works from home, his schedule can be fairly flexible, which is a real blessing, since he also takes me to physical therapy twice a week.  But especially with the economy tightening, and despite his 30 years of service to this one employer (30 years!), my husband, like many people, cannot rely upon work continuing as it has for the past few years.  There is such attention paid to every move that is made,  and every project has either been moved offshore for cost reduction purposes, or put on “temporary hold”.  Managing the resulting stress is a big challenge for him, and with my income at zero, managing our family economy has been a big stressor.

Our children have been real troopers for the past year.  They have done a good job managing their own expectations, and what they ask of us, and have really greeted the changes in our family (fewer and less grand vacations, not out to dinner as frequently, no expensive field trips for example…)  with openness and patience. 

Parenting from a scooter – and without being able to move quickly to be in the kids’ space when needed, has resulted in me being more creative in my relationship with them, and with my husband.  I simply cannot physically be the same type of parent as I was in their first years.  The question I now ask, is how do I remain a large part of their lives when I cannot show up at school unexpectedly, or decide at the last-minute to surprise them with an activity, or walk up to them and simply hug them or kiss them good night as they drift off to sleep?  What about my husband who has to fill that physical space left by my absence and keep his own relationship with them?

I am learning that despite the fact that he does things very differently than I, my husband is a wonderful parent, who is helping both of our children learn about themselves and the world.  My own father was a great man who parented much differently than my mother, and between them I remember it being a great balance.  The realization I had this morning is that I have to accept and celebrate the difference between my husband’s parenting style and my own – I must stop trying to control the spaces between our styles, and just let them be.  Our kids will appreciate that much more than they would appreciate my constantly trying to control everything that happens in their lives.  I need to relax and let them be.  That will be a gift to my entire family…

A new year of postings

2009 has gotten off to a pretty intense start.  The hectic end of 2008, the wonderful holidays, my 14th wedding anniversary (New Year’s Eve!) and the inauguration of Barack Obama as our 44th president has certainly made this an amazing time in our country.

I also started a very intense round of  physical therapy which is focused on correcting my walk and strengthening my legs in general.  Between the hip relacement and the MS, I have not driven a car or walked unassisted since December of 2007.  This is HUGE for me, as anyone who knows me will tell you.

This year, I am committed to being healthier than I have ever been.  Even with MS, I can still be an energetic and active person with a specific message to share.  Through my buddhist practice, I have learned that every one of us has a unique mission to fulfill.  Although I cannot always put my mission into words, I am always sure when I am doing the things that I should be doing – rather than what other people are expecting me to do.  I am a wife, mother, friend, sister, and daughter.  Like most women, I have responsibilities inside and outside of my family – as a board member, committee member, organizer, coordinator, and volunteer.  All of these are important to me, but my current condition directly affects how I can participate in these actitivies.  Using the phone and electronic communication more efficiently will be required for me to be able to have any impact on my future activities.  Flexibility in my own standards for myself will also be required…

The inauguration of Barack Obama

A few times in the past few years, I have considered the difference in my life before and after MS.  The inauguration of Barack Obama really forced me to examine these things even more closely.

BMS

Before my diagnosis of multiple sclerosis, I was a typical over-achieving woman with a career that I loved and MANY extracurricular activities.  I served on 4-5 boards, belonged to a few social organizations – one of which I co-founded.  I thought of myself as a black version of one of the Sex in the City ladies – priding myself in knowing the latest and greatest restaurants and clubs, and being on the “in” list for all of the “hot” events throughout the region.  At times, it got so busy for me that my husband complained that I was never at home – always at meetings – and not plugged into the kids’ activities enough.  I was very busy, pretty happy, and felt much in demand around the region.  All of my involvements were very important to me.  Looking back I think they made me feel important and in control and in demand.

AMS

After my diagnosis of MS, I have really had to do a better job of managing my time and my involvements.  My daily energy level is much lower than I have been used to, and as a result I have not been able to commit to many things.   With my lengthy recuperation after my surgery, I need an electronic scooter to get around, which means that someone has to drive me and construct the scooter before I can use it.  My husband and friends are fabulous, but even they get a bit tired of everything that comes along with me these days!

The inauguration of our new President was an amazing, uplifing, fabulous historic event, and as such, I definitely wanted to be in the mix.  BMS, I would be leveraging the hell out of my contacts and relationships to get tickets for everything,but AMS, my physical challenges are a bit much for me to manage in a crowd of 1 million people, or in  a cavernous ballroom being jostled by a thousand people.  I decided that it would be better if I not participate in many inaugural activities.  I would support from my home and with my family.  This was a whole new approach for me, but this was the best way for me to mark this historic and meaningful time. 

Letting go of my need to be in the midst of eveything was incredibly hard.  Watching good friends get tickets, ball dresses, cars and drivers from the sidelines was very difficult (heck, even my 80-year old mother went to a ball!), but it was wonderful supporting them from behind the scenes.  And being home watching the day’s activities with my husband, children, and mother was inspiring and heartwarming.  Seeing so many people on the Mall with no negative incidents occurring, and with people getting along so positively was such an incredible sight.  The diversity (racial, ethnicity, age…) within the crowd was also deeply encouraging to me.

So now what?  This inauguration made a huge difference worldwide.  It also made a huge difference in my own family – bringing family members together who had not spoken to each other for years (more on THAT another time!)  Our new President has brought with hm a new spirit of open discussion and negotiation.  A beautiful family and dynamic energy that I have not felt towards the White House in many, many years.  Despite the financial challenges that are currenty facing our country, I am hopeful about our future – and plan to do what I can to help in my little corner of the world….But please know that whatever I am able to do, the reality of my MS will play a role.  I am determined to do whatever I can to help our new President be successful, and to inform him and his senior staff about the things that we all need to live happy, healthy lives — with or without MS!

Happy New Year!

The year 2009 has started, and I am finally able to lift my head above the (raging!) waters of the holidays and to try writing again!  Happy New Year everyone!

I have started thinking a lot about what I am supposed to be learning from this whole MS experience.  The week, Oprah had her “Live Your Best Life” series, and I watched it all week.  Everyone who knows me knows that I do not ever miss an episode of Oprah (it even is re-aired every night at 1AM, and I watch that if I miss the earlier broadcast!)

The question of whether or not I am living what could be called my “best life” is a good one.  What exactly does that look like, since my life has been turned completely upside-down?  There are many people who receive much more devastating diagnoses than MS every day – what is wrong with me?  What prevents me from being able to pull myself together — like [I would like to think!] I did every day before my diagnosis?

During the episode about spirituality, one of the speakers said that when you find yourself stuck in a difficult phase of your life, it makes sense to ask Spirit “What am I being asked to give birth to?” or “What am I to learn from this experience?”  I have been asking these questions, and have not yet found a definitive answer, but asking the questions does open up the space to receive some answers….

Had an appointment with a physiatrist last week – I had never heard of one before, but have learned that it is a medical doctor with an expertise in physical therapy.  Who knew???  Based on his suggestions, I have started working with a neurological physical therapist who is clear that my main therapeutic goal is to walk unassisted again.  Pretty aggressive for someone who uses an electronic scooter every day!  I now have exercises to do at home and 16 outpatient sessions scheduled between now and March first (thank the universe and my husband’s employer for health insurance coverage!)  I will keep you posted on my progress….

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.