These were the headlines from the flyer promoting our presentation for MS Awareness Week:
“2 different forms of MS. 2 inspiring
voices. 1 continuing love story.”
As part of Clarke Historical Library’s
annual speaker series at Central Michigan University, we had the opportunity to
share our stories as a husband and wife who both are living with this chronic
illness.
Combined, we’ve taken on MS for more than
25 years and show how the disease impacts people so differently. Jennifer
was diagnosed in 1997, has secondary-progressive MS and no longer walks. Dan
was diagnosed in 2000, has relapsing-remitting MS and is training to run a 10K.
According to the National MS Society,
more than 400,000 Americans have MS. Of those diagnosed with this disease of
the central nervous system, more than 18,000 live here in Michigan. Knowing
these numbers makes it even more amazing that we found each other and continue
to defy the odds we face together.
Our relationship started nearly a decade ago at the Society program, “Finding Your Buried Treasure.”
“I think that boy kind of liked you,
Jen,” is how Jennifer’s mom opened their discussion as they drove home from
that daylong event.
“No, Mom. Dan’s a self-help group
leader, and I’m a group leader too. Really, that’s all it was,” Jennifer
answered back, but all the while she kept thinking, “Wouldn’t it be awesome if
he did?”
She soon learned that moms always know.
“I know we both are self-help group
leaders. Really, there could be so much more,” Dan remembers thinking as he
drove home with Jennifer’s email address and phone number in his pocket.
We both wanted to get to know each other
beyond the disease that introduced us.
Our relationship grew from emails and
phone calls to three years of dating and a wedding on Sept. 10, 2005.
Since our wedding more than six years
ago, we have actively led an MS self-help group, participated in annual Walk MS
events and served on the regional MS volunteer council.
We also do as much as we can through our
writing, speaking and living life to the fullest to increase MS awareness and
help people throughout our community and beyond to move forward with their
lives.
This is why our recent presentation at the
Clarke Historical Library was especially important for us. In addition to
speaking for MS Awareness Week, we were invited to present as Michigan
authors and to share stories from our recently released book, Despite MS, to Spite MS. Our book is a compilation of personal essays
about how we are living with MS, accented by haiku-style poems from author Judy
Williams, who also has this disease and shares these poems on her blog, “Peace
Be With You on the MS Journey.” Portions of the book proceeds are benefiting
the Society and Camp Courageous, a camp
for people with disabilities in Dan’s hometown of Monticello, Iowa.
As Jennifer writes in the book’s
introduction, “Not only does our story need to be told, but our voices should
be heard. Mine being that of a woman living life with MS and a wheelchair,
being as hopeful and positive as possible, Despite
MS. And, the voice of a man, my husband, who is working, running, and also
living a hopeful and positive life, To
Spite MS.”
We are excited to write for the Society’s newly created blog and look forward to sharing more of our stories
with you here.
Thank you for the article. I wish Ann Romney and Michelle Obama would do more to benefit persons who have Multiple Sclerosis, both Ann Romney and Michelle Obama's father were diagnosed with MS.
ReplyDeleteWow, I did not know that Michelle's dad had MS ...
DeleteWe sent a copy of our book to Michelle Obama, but haven't heard anything on it yet. Planning to send one to Ann Romney as well. We truly are all in this together!
DeleteGreat... Time to get the word out .. Look out MS .. We are here to Represent !!!!
DeleteYours is an amazing story, and I never tire of hearing it.
ReplyDeleteI too just heard Ann Romney has MS and a form of cancer. I also remember reading in an MS society newsletter that President Obama is supporting people with MS applying for SS disability making it easier to get approved. Do you know anything about this? I just applied and hope this is true. Thank you for your story it brings peace to me knowing their are people out there getting the word out about this disease.
ReplyDeleteI hope that they make it easier to get ss...i got denied and been fighting it..its sucks because i can't work..it makes me really depressed.
DeleteMy husband and I also both have MS. We went to school together and met 12 years after high school to find out we both have MS. We have been married for 4 years and I recently gave birth to our baby boy. Life has been hard and full of bumps but having eachother makes it so much easy. We compliment eachother in the best way posible. We have a support group here in Puerto Rico thru fracebook and are also group leaders. It is awesome to see another couple like us ! Here is my email it would be great to get to know eachother! palomaaymat@gmail.com
ReplyDelete@sunset: It is true that the Social Security Administration has added a form of aggressive MS to Compassionate Allowances listing. This victory comes after many years of hard work by dedicated MS activists at the National MS Society.
ReplyDeleteThe Compassionate Allowances Program expedites the review of Social Security Disability Insurance (SSDI) applications for diseases and other medical conditions that invariably qualify for disability insurance based on minimal objective medical information. The benefit of this is two-fold: it gets the most severely impacted applicants approved for Social Security Disability faster and it alleviates the backlog of applications for others in line. For additional information, please check out the National MS Society’s Activist post http://msactivist.blogspot.com/2011/12/another-step-forward-for-ms-community.html. To follow the blog, please see www.msactivist.org.
I'll be sure to check this out, I really hope I would be able to attend this gathering. Thanks.
ReplyDeleteworking moms support group nyc
Hi, my girlfriend was diagnosed this year with MS and I want to know all I can about it so I may support her better. I could use as much advice as possible. Anyone care to share what they have learned with me?
ReplyDelete