My Special Friend

There are so many people in the MS community who I have come to know, respect and truly love for their abilities to live with this disease, and I would like to introduce you to one of these people, my dear friend DJ.

DJ and I met through the internet, she was in California and I was in Ohio. She had put out a post on a patient forum that wasn’t very active, asking ‘is there anyone out there like me?’ I saw her message, introduced myself in the cyber world, and invited her to come to the online forum I was active with. We immediately became friends. Until that time she says she thought she was the only person who was like her, and finding others with aggressive primary MS was a great comfort. I know her family was particularly concerned that she had found ‘friends’ online and were especially wary when I had the opportunity to visit with her in person in California. They quickly saw I posed no danger, and we cemented our relationship during that visit.

We first met in 2009 when my husband and I took a detour to California to allow me to me DJ in person.

DJ’s story takes so many twists and turns that it deserves to be its own mini-series on the Lifetime Channel or at least the ongoing plot of a soap opera. She is open to everyone about her struggles and doesn’t hesitate to share her almost 30 years of sobriety. Her drinking led to a split with her family many years ago, and she continues to work at healing those wounds with her children.

DJ has lived with an MS diagnosis for several decades and has spent the last 30 years in a wheelchair, and increasingly dependent on others, but that hasn’t kept her from being engaged with life. When we talk on the phone we often share family stories, or commiserate about the latest headlines - especially the ones about the current political climate. She loves to get out, go for a ride with her grandson, and sight-see from the passenger seat.

I’ve learned a lot from DJ about grace and acceptance of having MS. She rarely allows the conversation to be about her and her health, even though she is limited to her wheelchair, has a permanent tracheotomy and Foley catheter, and is pretty much in constant pain or at least discomfort. Even though my problems with MS can’t begin to compare to what she goes through, she has insisted that it still doesn’t change the fact that I also have my own problems. She taught me that important lesson so many of us wrestle with – my MS is not the same as anyone else’s MS, and there is no need to compare. So when she asks me how I am doing, I am honest and she commiserates with me.

Pennsylvania is a lot easier to reach than California - here are DJ and I enjoying time together.

One of DJ’s daughters relocated her to her hometown in Pennsylvania a few years ago, making it easier to visit with her in person (and I am long overdue on making that trip!). She still lives in her own apartment, thanks to the assistance of great home care during the day, and she is as stubborn as can be about most everything. I think it is that stubbornness that pulls her through, particularly on those days when she is in such physical distress from her MS and wonders aloud to me why she is still on this earth. She says there must be a reason why she is still here, despite all of her problems, including a particularly life threatening episode of meningitis that had her hospitalized for almost a month. Even her doctors are perplexed as to how she has managed to get through all these years.

Like so many people with a chronic disease, DJ lives on a very limited income and she is appreciative of any extras that come her way, especially when her doctor finds ways to get her supplies taken care of at reduced cost. I am constantly amazed that she has found a way to live with so many needs and such limited resources, and am thankful she has a caring and compassionate health care provider who takes the time to listen to her and help where possible. She also has a wicked sense of humor about her situation - for example, when she reached social security retirement age she called me to let me know the good news that she was no longer disabled. Social Security had sent her a letter stating she was no longer disabled, and was now just retired, and they had cut her income and benefits. We had a good laugh because she knew crying about it would do her no good.

DJ has been telling me for some time that she really wanted to go bowling – and I challenged her to send me pictures when that happened. Her grandson sent these to me and they made me smile, and I hope it illustrates just a little bit of why I want to share DJ’s story with you.

She found the lightest ball possible - this one is seven pounds.
DJ always asks the alley to put up the bumpers for her - otherwise her wheels get stuck in the gutters.
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DJ had a score of 100 on the first game but slipped to a 75 on the second game. She tells me she even had a strike!

I hope this story of my most special friend DJ will encourage each of you to face your challenges, and do something special today.

Wishing you well,


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