Bonni Tipton is a Delaware Chapter volunteer and Walk MS Team Captain (Team Walk This Way). For MS Awareness Week, Bonni served as an MS Ambassador and placed orange ribbons at locations around Delaware to illustrate her journey with MS. Her story is depicted and written below in her own words:
If I had the option to go back in time and somehow magically avoid developing Multiple Sclerosis, would I? MS has been just a fact of life since 1990. As I reflect on the significant moments, I realize that my story is worth sharing.
At age 26, physical health was taken for granted. I did not even have a decent family doctor. There was an ancient doctor who had $20.00 walk in visits. The occasional anti-biotic / cough syrup visit was it – even for my seven year old daughter! Shame on me!
Slightly more than two years into the love of my life (my career) I quickly learned how to use my BC/BS card. Well, perhaps not so quickly. It was a Sunday afternoon and I was grocery shopping (Acme in Trolley Square - pictured right - is where I experienced my first MS symptoms) for the week. Finishing the checkout, I had my checkbook out – I could not write the check. Literally.
Imagining the cashier thinking, “the check is rubber – it’s a psych block” I was horrified.
At that point in my career, Monday mornings required the most handwriting. I struggled to control my motor skills enough to get it complete. Eventually I called the aforementioned doctor explaining what had happened. Please sit, he said “take two aspirin and call me in the morning.” I didn’t know whether to laugh or cry, I think I did both!
That evening I decided that I needed to know what was wrong and visited the emergency room. Carpal Tunnel Syndrome was just becoming en vogue and I was sent home thinking that was the problem. I did not, obviously, have a good family practitioner. My eldest brother however had a trusted orthopedic doctor. I made an appointment. An EMG was scheduled. A few weeks later, by the grace of God, I woke up one morning thinking I had something in my eye. I fooled with it through the morning at work until I realized that nothing was in my eye. There was a straight line through the center of the vision in my right eye. The bottom half was clouded over, the top as clear as normal. I called the optometrist I had seen through childhood (Pictured left is the location of his former office). I was in his chair within the week. The problem had corrected itself by this time. Dr. Moss, bless his soul, was always quite gruff when I saw him as a child. As the exam progressed, he became more kind than I could possibly recall. The word neurologist came up. I was terrified. His office referred me to a neurologist. Interestingly enough, I went to see the orthopedic after the optometrist. We discussed the EMG results and the need for CTS surgery on my right wrist.
I used my third ribbon to give a shout out to former and current employers (pictured below and to the right). Beyond the barbed wire fence, once proudly stood an awesome hot-mix plant. She served her customers with excellence and love. Although she can no longer be seen, her spirit lives. It was here I was employed when diagnosed. Perhaps it was naivete, or maybe blind faith, but it never occurred to me to keep my diagnosis a secret. In 1990 there wasn't a PC in most homes and when my literature for the newly diagnosed arrived from the DE chapter of the NMSS, I was surprised by the topic of disclosing to employers.
My faith proved absolute. The private owners were retiring and sold us to a public company in 1994. HIPPA was not in effect yet. With the transition I had a pre-existing condition. Appleby (the owner of the company at that time) sent word to me, that if I had any MS related medical issues in the first year that they would pay the bill.
Even after the private to public transition, there was nothing but respect and care for my "condition". After one bad step to my current employers in the same industry, still I was quite responsible and made them aware of my extra "costs". Relationships are built on trust.
In 2009, I had the epiphany that working full-time was detrimental to my personal business affairs. At that moment I promised myself that before 2010 ended I would file for SSDI. I could, after all, work some hours which meant I didn't have to totally leave my passion behind. It was during my time off I discovered not everyone had employers as gracious as mine.
Even my neurologist jokingly said "you must know where the bodies are buried" upon my part-time return. When it became a financial necessity to give up waiting for an appeal date and return to work full-time he asked "for the same people?" My "yes" reply was greeted with a wide eyed "really?"
In fact, Greggo & Ferrara (my employers) were thrilled to have me back full-time. This is my opportunity to publicly thank them all for their acceptance and graciousness!
To donate to Bonni's Walk MS: Wilmington Riverfront team, click here: http://main.nationalmssociety.org/site/TR?px=7619574&pg=personal&fr_id=17685
Linda Sieber's Journey with MS
Linda Sieber, and her husband Bob (pictured left with daughter Jennifer), are active volunteers with the Delaware Chapter. Linda is one of the 1,550 Delawareans living with MS. For MS Awareness Week, Linda served as an MS Ambassador and agreed to share her journey with MS (in her own words) to help raise awareness about this disease:
I decided to become an MS Ambassador to help spread the word about MS and how people can get involved to help the cause to one day find a cure.
I was first diagnosed with MS in April of 1995. This was a shock since I never had any major health issues in the past. My only contact with MS was my Aunt and a relative on my husband’s side of the family. This concerned me because I knew of the difficulties they had with MS and they both passed away at an early age. A lot of emotions came over me. Questions of whether my MS was hereditary came into my mind since I have two children.
My main focus was to learn how to deal with this diagnosis which was difficult to understand. I was embarrassed for anyone to know that I had MS. Except for close family members, no one knew I had MS. Everyone who knew me would not have known I had any symptoms. I looked fine. I was able to hide my problem for a few years. The only visible problem was balance; occasionally I would trip and fall. As my symptoms progressed, it became apparent to others that there was something wrong. As time went on I revealed my diagnosis to my bosses at the company I worked for. They were very supportive and attempted everything they could do to accommodate my needs. After several years, I ended up leaving on a disability retirement.
I used to be a very active person, but my lifestyle has changed due to my disability. I may not be able to do things that I used to do and I have found different ways to do things today. I think that having a positive attitude and having a loving and very supportive family and friends helps me get through. I support the MS Society and enjoy volunteering at the local Delaware Chapter.
Linda and her family will participate in the Walk MS: Wilmington Riverfront on April 14th. Have you registered for Walk MS yet? 2011 Walk MS raised over a quarter million dollars. When you give, you support programs and services and cutting edge research. What you give can change thousands of lives. For more information or to sign up, contact the Delaware MS Society at www.delawarewalk.org or calling (302) 655-5610.