by Joyce Render Cohen
The author has lived with worsening
MS for nearly 25 years.
When I was diagnosed in 1987, I was a 40-year-
old wife and mother of two teenage sons, with a
full-time job at our local art museum and an active
social life. My husband and I travelled frequently
and since I enjoyed cooking, we entertained often.
How would I be able to continue doing the things
I enjoyed most if I were living life in a wheelchair?
It turned out a wheelchair was not the most difficult issue.
With each exacerbation or bout of optic neuritis,
some of my abilities were reduced or lost. Almost
every part of my body has been affected, leaving me with diminished vision, finger and hand
dexterity, bladder control, bowel function, reduced
mobility and spasticity in my legs. I’ve had to
relearn to walk more times than I care to count
and it took time for me to accept the need to use
a cane, then a walker, a rolling walker and now
sometimes a wheelchair.
Vision loss has left me blind in one eye and with
only hazy central vision in the other. Giving up
driving took away much of my independence. Even
after 15 years, it is still a daily frustration not to be
able to just get into my car and go somewhere. Loss
of bladder control is an ongoing story of expense
and worry. Trials of new procedures, such as Botox
injections into the bladder and Inter-stem (a
bladder pacemaker), continue as part of my life.
Fear and uncertainty are also with me. At times
I feel as if I am part of a sand beach. The ocean
waves roll in and wash some of it away, leaving less
and less shore. What will finally be left of me? Will
I lose my remaining vision? Will I be an alert mind
trapped in a paralyzed body?
It’s as if I keep being plunged into deep water, but
instead of drowning, I fight my way to the surface.
I keep trying. Exercise, yoga, cranial sacral therapy,
bee stings, energy work, acupressure, acupuncture,
foot reflexology, dietary modifications, nutritional
counseling are all things I’ve tried. Some were helpful, some not. I’ve found that daily exercise, deep
breathing, stretching and aerobic movements in a
chair are good for my mind as well as my body. I do
need my husband’s help getting on the exercise bike.
Playing lively music when I pedal never fails to raise
my heart rate, burn
some calories and lift
Living with MS has
taught me to take
help from others, to
admit to limitations
and to find new ways
to do the things I
need to do or enjoy
doing most, but
many changes have
affected our fam-
From left: Mark (son),
Shelly (husband), Leslie
(Bert’s wife) and Bert
(son), with Joyce Cohen.