I forgot I had MS

Seven months ago, in the frigid pre-dawn hours of January 5th, two New York state police officers stood in our kitchen. They explained to my husband and me that our beloved, yet very troubled, son had taken his life, and at that moment I forgot I had MS.

Oh, there have been other times since being diagnosed in 1999 that I wasn’t aware of my condition, but it was always lurking, ready to once again take up too much of my thought. On that morning it was the furthest thing from my mind, and it stayed that way as our now family of three stumbled through the next few horrible weeks. 

In the past, I would look at any major event in my life in terms of its impact on my MS. The enormity of this situation changed that. And, with the help of devoted family, dear friends and my aide Lori, I was able to focus on and accomplish the daunting tasks that death brings to a family. When you have MS – especially for many years – there is a tendency to forget just what you’re capable of doing or being. My husband needed his wife, my daughter, her mom.

Now, seven months later, the anesthesia that such tragedy brings has worn off. I remember I have MS, and my symptoms have been as hard to handle as the overwhelming grief. But, life does go on and I am needed to help and guide my daughter while she tries to put her life in some semblance of order (she is starting her senior year of high school this September). My husband, who has taken such exquisite care of all of us needs all the support and love I can give as we grieve for our son as a couple.

I’m trying hard to keep my thoughts on other things that are so much more important than MS, and I truly hope that one of life’s happy events makes me forget again that I have this disease.

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Susan

Susan Skoney, Blogger

Susan Skoney was diagnosed in 1999. She lives in western New York with her husband Michael and daughter Hannah. She worked many years in public relations and advertising, and has just started writing about her MS in the last few years.

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    46 Comments

  • Deborah   Aug 5, 2015 11:36 AM
    I am so very sorry for your loss. I know how it seems to be the largest thing in our lives sometimes, but I can only imagine your pain and how that makes MS and everything else other than your family insignificant.
  • Laura   Aug 5, 2015 11:57 AM
    I am kind of in your shoes. My husband of 30 years did the same thing. Prayers. .. God bless.
  • BrianP   Aug 5, 2015 12:03 PM
    Wow, Susan, you represnt the enormous strength of will and beauty of character that I've observed in many of us with MS. Far from diminishing us, MS has amplified our humanity which shimmers throughout your blog. You and yours deserve peace of mind and serenity now.
  • Emily   Aug 5, 2015 12:06 PM
    Susan,
    I can't seem to find the word to express to you how sorry I am for your loss. I am confident that you will have many occasions that will cause you to forget you have MS but for wonderfully joyous reasons. I wish you the best.
    Emily
  • Michelle Dooley   Aug 5, 2015 12:08 PM
    Dear Susan, My heart goes out to you. While I will never fully comprehend the depth of your pain, I can understand it a little. I, too, have MS and our son attempted suicide in 2011. He then spent an entire year refusing to talk to anyone in his family. We were left guessing at the cause for his pain. We were fortunate. He was not successful in his attempt. After a year apart, we finally convinced our college sophomore that there was nothing he could tell us that would change how we felt. We feel blessed to have him back in our lives. But it was that incident that put my MS on a back burner and there it has stayed. There are times I should give it more of a priority but don't. I am so very sorry for the loss of your sweet son. I will keep all of you in my prayers.
  • Regina Dakin   Aug 5, 2015 12:18 PM
    Susan,
    I know there are no words to help. I was diagnosed in 2005 and my son took his life in 2012. I have a daughter who needed help grieving her brother. Please know that you are not alone in your grief. Even though no one can ease your burden, there are people who understand and walk this path beside you.
    Regina
  • thomas   Aug 5, 2015 12:37 PM
    the mind is a powerful tool, the fact that the tragedy focused your mind on something other than your MS had a powerful effect on your symptoms apparently as you were able to "forget" you had MS....what a blessing disguise that is...for it shows you something about your mind and MS, if you can maintain your focus on something besides MS you might be able to beat the symptoms....that is why I always recommend transcendental meditation classes for people who have MS and the use of medical marijuana to help the meditation and decrease spasticity.
  • Barb   Aug 5, 2015 12:37 PM
    Susan,
    So sorry to hear your sad news. Our story was identical, losing a troubled son to suicide, except that our daughter was entering her sophomore year of high school. The waves of grief were at times overwhelming, and I'm afraid I failed others at times. Remember that you're doing the best you can for your husband and daughter, given that you're still grieving also. Take care of yourself as the MS can be nasty when your defenses are down. We continue to travel the new road to normalcy in our lives, a family of three instead of four. I'm praying for you.
  • Sharon   Aug 5, 2015 12:42 PM
    Susan - so sorry for you and your family's loss. I appreciate you sharing your story and strength with all of us indirectly or directly related to MS.
  • Chris   Aug 5, 2015 12:56 PM
    I am so sorry for your loss! Having lost our youngest son I know the pain and emptiness that you are feeling. It is now 13 years out for me but I still have times when I am overwhelmed with it and then shortly afterword I'll have an MS flair. Do your best to take care of yourself and take one day at a time! Sending hugs and prayers for you!
  • Jill   Aug 5, 2015 1:11 PM
    My heart breaks for you. MS is hard but losing a child is unbearable. May god give you and your family all the blessings you need to heal.
  • Barbara Karr   Aug 5, 2015 1:18 PM
    Susan I think you are looking at MS all wrong. Unless it has severely crippled or disabled you in some way you are giving it too much importance in your life.. You have husband standing by your side. You have a lovely daughter entering the most exciting year of High School. Celebrate with her. It will help all three of you concentrate on something besides the lost son/brother. He will never be out of your thoughts, but don't stop your lives because of it. The same with the MS. Don't wait for the next happy occasion . MAKE IT! You still have control of whether you are going to be happy or not. Don't let MS run yours and you familys' lives.' Good luck to you and God bless. Barbara
  • Alexis DeHaas   Aug 5, 2015 1:41 PM
    Susan I'm SO sorry for you loss, I couldn't even imagine your pain. Please stay strong, my Prayers are with you and your husband. Take care you can do this ♥♥♥
  • Brigit   Aug 5, 2015 1:46 PM
    My heart breaks for you and you family. Death is difficult enough to deal without having MS. You and your family are in my thoughts.
  • Marsha   Aug 5, 2015 1:49 PM
    Our 21 year old daughter, a U.S. Marine, mother to my first grandson, died suddenly nearly 6 years ago. I know about that horrible knock at the door. There is nothing to prepare you for the life change of child-loss-grief. But for me, my ms stayed in remission. I imagine the Lord knew how much I could handle and how much I couldn't. I am hugging you gently.
  • Teresa   Aug 5, 2015 2:18 PM
    Susan Skoney's August 5, 2015, blog hit a chord in me. As the Mother of a thirty year old son, my heart goes out to her and I am filled with sorrow for her and her family at the loss of her son. As an MS Warrior, I understand the rare events that take precedence over our disease and cause us to "forget" for a time. I believe that directing our thoughts toward a positive place each day helps. Some times that is all we can do for ourselves. My husband, who has been my "rock" for forty years, is now going through some serious health issues of his own. It's my turn to offer my shoulder to him, albeit from my wheelchair. Together we will endure. I believe that to be our path. Keep writing, Susan. You are a voice of many.
  • Julie   Aug 5, 2015 2:59 PM
    Susan, thank you so much for sharing your story of loss. I have a son and a daughter and can't begin to imagine the pain of loosing one of them.
    Your story is a reminder to us that MS is not what our life is about. Family, friends, and our favorite past times should always come before MS. In fact I don't even want MS to be ANY part of my life.
    Thank you again for sharing with us and reminding all of us what is really important.
  • connie   Aug 5, 2015 3:16 PM
    My oldest son took his life last October: I am still in heart break mode, my husband and I along with his brothers and nephew are devastated, people say in time, I say their is no time, you just learn to live with it and cherish how very very much you loved them. I hope your journey through this brings you peace. Michael had MS but I know that wasn't the reason for this, I have volunteered along with my husband and grandson for eight years with the MS Society, Michael had only known for a few months, but a support system is enormous, his wife of eight years ask for a divorce and was taking their only child away, whenever someone is diagnosed with a disease they need all the love and support available, I tried to be there but it wasn't enough, I'm glad you have a loving husband and daughter, it helps to know your not alone in your fight, Thank You for sharing and God Bless
  • Lori   Aug 5, 2015 5:34 PM
    Dear Susan,
    Thank-you for sharing a part of your life that combines your profound grief with having MS. You expressed so much in five paragraphs as only a skilled writer can do. Godspeed for many happy events in the future that allow you to forget, again.
  • Torrie Mullen   Aug 5, 2015 5:52 PM
    My condolences on the lost of your son! May God give you and your family strength through this time and always. God bless you.
  • Jutta Helm-Stone   Aug 5, 2015 6:07 PM
    I am so sorry for your loss. It sounds as if you are on the right track. Stay the course. MS will still be the silent monster in the room but you will be able to focus on the important things in your life; enjoy the positive events as they happen!
  • Marianne Vallet-Sandre   Aug 5, 2015 8:01 PM
    This is a very touching and sensitive piece. It reminds us all (even those of us who do not have MS, but who might be dealing with other challenges) that there is a scale to measure pain, as there is a scale to measure joy and happiness. The most extreme events we are called upon to face continually reset those scales, and cause us to reassess.
  • Tuesday   Aug 5, 2015 9:17 PM
    Mrs. Skoney this is beautiful and touching. I think of him very often and I wish that I could have found a way to show him all the love that he had not have been seeing at the time. I am happy to hear that your daughter is a senior now! I hope to see future posts of the great things happening. Optimism is a a good cure through times of difficulty. Without the hard times the good times in life wouldn't be so great. You're an amazing woman with a large heart and I am so happy that you are doing much better. I have your family in my thoughts and prayers.
  • Jennifer   Aug 5, 2015 11:10 PM
    Susan, my prayers go out to you and your family. This weekend I caught myself thinking about and prioritizing all the "bad hands" life had dealt me. It was strange that MS was #3 on the list. First was the period when my husband and I simultaneously lost our jobs. Second was the breakup of my first marriage. The realization that MS is not the biggest problem is a reminder to me that there are many things that make life special. Certainly good health is an important one but not the only one. May you and your family find joy again in living and loving each other.
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    SmartyPants  Aug 5, 2015 11:48 PM
    My heart goes out to you, the grief of losing someone that you love unconditionally is at times unbearable. I lost my mother last month, we spent sixteen days together in hospice and we helped ease her into the next dimension. She kept saying that sometimes she's in the bed, and other times she is in another dimension, at the end she was taken away by my Grandpa Jerry, who my mom loved as he was funny as she was, is. I thought i was doing fine until today when i pleaded for her to come to me in a dream. I have dreamed of her many times and its such a joy being with her again, i feel the loss and i can hardly bear it. But she taught me not to be afraid of death and she showed me the immense dignity a person can have in their final days. At the end she was teaching me. At the end i was the mother and she was the child, i fed her, combed her hair. I never had any children so she was the only child i ever had.
  • Avatar
    SmartyPants  Aug 5, 2015 11:52 PM
    My heart goes out to you, the grief of losing someone that you love unconditionally is at times unbearable. I lost my mother last month, we spent sixteen days together in hospice and we helped ease her into the next dimension. She kept saying that sometimes she's in the bed, and other times she is in another dimension, at the end she was taken away by my Grandpa Jerry, who my mom loved as he was funny as she was, is. I thought i was doing fine until today when i pleaded for her to come to me in a dream. I have dreamed of her many times and its such a joy being with her again, i feel the loss and i can hardly bear it. But she taught me not to be afraid of death and she showed me the immense dignity a person can have in their final days. At the end she was teaching me. At the end i was the mother and she was the child, i fed her, combed her hair. I never had any children so she was the only child i ever had.
    Yes there were times i forgot i had MS in those grueling days of which eight were sleepless, the MS wrecked havoc inside me, like the dragon which it is, it can render you wasted and aching. At times i didn't think i could bear the stress of the event of seeing her wasting away.but i made it through and had to do catch up sleep for a month afterwards.
    you should write about your experience your writing inspires.
  • Elaine Volker   Aug 6, 2015 5:30 AM
    Very well said Sue. You have certainly been faced with more challenges than any person or family should have to endure. Thank you for sharing your hurdles.. good and bad. I pray that your good days outweigh your bad and I look forward to reading more.
  • Lola Hale   Aug 6, 2015 6:54 AM
    I am truly sorry to hear of your family's loss. Words fail me for what to say except thank you for the blog. I understand the times in life where MS can be forgotten. These are moments of extreme emotion in my life, both overwhelming joy or grief puts my MS in a corner of an unused room my life where I forget it's is there, biding its time, patiently waiting until it can resume its grip on me and my family. I send you all the best wishes I can to you and your family, take care, Lola Hale xx
  • JD   Aug 6, 2015 8:04 AM
    My condolences to you and your family.
  • Jonathan   Aug 6, 2015 9:56 AM
    Stay strong. Stay strong for your husband and your child, and for the MS community that needs your voice.
  • Cheryl Hunter   Aug 6, 2015 4:18 PM
    I was diagnosed in 2000, and quite frequently forget that I, too, have MS. When my beloved son took his life in 2010, it was all consuming and I forgot, like you that I have MS. But soon after I was reminded. All of this was too heartbreaking to handle but I have come out on the other side and have once again forgotten the disease that likes to threaten me. I am victorious over death ... the death of my son and the deadly effects of this disease. I am so glad you have been too!!!
  • Sueann Waddell   Aug 6, 2015 8:51 PM
    Thank you for sharing...grieving is so overwhelming. My husband died suddenly Halloween...I understand completely how you forgot about MS.
    Just remembering to breath is difficult.
    Harder to accept that our love didn't matter...trying to appreciate the time
    we had them.
  • beachangel26  Aug 7, 2015 4:19 PM
    I am so very sorry for your loss, I have met with alot of family deaths since 1986.. It does seem to be the biggest thing in our lives for a longer time than hoped for, I know your pain, My heart goes out to you, I loss my daughter at 3 yrs, old, It was the hardest thing I went through, Years later I became a Christian and it helped me to understand we all have a day appointed for us to die, I wanted to go then, NOw I am sure I will see her someday and I think What a most Glorious Day it will be when I Meet her again, More glorious than the day she was born, I did not have MS till years later, God Bless you all, and maybe I can help more if we connect , on here,
  • Connieolney   Aug 9, 2015 11:35 AM
    Lost our gal at 49 after 11 yrs. of battling.Big C. Our hearts go out, sweetie. Good memories and pictures help.Keep them handy. Make a quilt in her honor? write if I Can help you. It can be ready this time next year Love from fellow MS mom age 73. Connie
  • Connieolney   Aug 9, 2015 11:35 AM
    Lost our gal at 49 after 11 yrs. of battling.Big C. Our hearts go out, sweetie. Good memories and pictures help.Keep them handy. Make a quilt in her honor? write if I Can help you. It can be ready this time next year Love from fellow MS mom age 73. Connie
  • gullatte_tracy  Aug 13, 2015 3:50 PM
    My heart and love goes out to you,.MS CAN MAKE YOU HAVE EXACLY HOW I LOOK AT MS. MUILTPLE SITURATIONS. SOME WE CAN NOT CONTROL..I PRAY LOVE FOR YOU AND YOUR FAMILY.🙏amen😇
  • readytogo  Aug 16, 2015 12:24 AM
    I am so sorry for your loss. I cant imagine what you could possibly be going through. Praying for you! Be well!
  • Heidi Tsitsou   Aug 17, 2015 3:50 AM
    Last year my son was found to have MS He is only 29. I am having difficulties in coming to terms with everything and knowing the right way to behave towards him. I feel some days as if I have such a weight on my chest. My son doesn`t want to talk about it and I feel as though he is suffering inside but shows us how everything is the same. At the moment I don`t really understand what is going to happen, how quickly and what the future holds for us and him.
  • Meredith Knight   Aug 25, 2015 12:56 PM
    I've had MS since 1981...so its been with me for many significant events. My daughter was sick from 13, had a liver transplant in '96, it was a rocky road from when she first became ill until she died suddenly at 26 in DC (we live in Maine) Suddenly, we were a family of four...Her little sister did the eulogy in both the DC funeral and the memorial in ME. I don't dream as if I have MS...even though I'm now secondary progressive. My MS just IS...and we work around it...my son is exemplary in helping, my youngest daughter and new husband made sure we were taken care of in Philly when she graduated from Veterinary School this May. And I always feel Joy's spirit with us. I'm only telling you these things because there IS life after trauma..really..you just have to allow it in your heart. While I cannot forget I have MS (its been the source of many embarassing moments). There but the grace of God go I..my son was dx with Type I diabetes and is now an alcoholic. My husband had surgery on his right foot this morning and will be laid up for weeks..I came downstairs to get my Kindlefire, and his tablet/phone, some spoons for his yoghurts. Hit the diningroom, exhausted, so here I am resting (okay, talking with you) and up I'll go and see if the JackRussells aren't bothering his foot....At the 10 year mark, my sorrows about Joy just lifted. I will be going, but just reread your post. at about 7 months Doug (son) was taking off on his motorcycle without his helmet. I simply left...really left...for about three days (I did communicate with my husband)...driving home on the route that the girls and I came frequently from Vermont I pulled over and simply sobbed. At home I told Doug that if I caught himie without his helmet, I wouldn't visit him in the hospital nor go to his funeral. I wasn't losing two children in a year. And he NEVER drives if he's had anything to drink. I mean anything. I guess this telling you about the trauma of 7 months was important...oh, Joy collapsed in the middle of a restaurant with her boyfriend. One of her close (but sorta snarky) announced "leave it to Joy to upstage the Pope"...I guess that was JohnPaul II...Weird, but still a touch of "humor" amongst all the tragedy...Off I go..I sincerely hope that this long message will help you in the future days ahead of you. I have MS (and work with it) but it doesn't have me..okay, too trite..but what can you say when you fall down cement steps just before your youngest daughter's wedding..what you say, is "where is my wheelchair" and wheel down the aisle...and Doug caught me...Meredith
  • Meredith Knight   Aug 25, 2015 12:57 PM
    I've had MS since 1981...so its been with me for many significant events. My daughter was sick from 13, had a liver transplant in '96, it was a rocky road from when she first became ill until she died suddenly at 26 in DC (we live in Maine) Suddenly, we were a family of four...Her little sister did the eulogy in both the DC funeral and the memorial in ME. I don't dream as if I have MS...even though I'm now secondary progressive. My MS just IS...and we work around it...my son is exemplary in helping, my youngest daughter and new husband made sure we were taken care of in Philly when she graduated from Veterinary School this May. And I always feel Joy's spirit with us. I'm only telling you these things because there IS life after trauma..really..you just have to allow it in your heart. While I cannot forget I have MS (its been the source of many embarassing moments). There but the grace of God go I..my son was dx with Type I diabetes and is now an alcoholic. My husband had surgery on his right foot this morning and will be laid up for weeks..I came downstairs to get my Kindlefire, and his tablet/phone, some spoons for his yoghurts. Hit the diningroom, exhausted, so here I am resting (okay, talking with you) and up I'll go and see if the JackRussells aren't bothering his foot....At the 10 year mark, my sorrows about Joy just lifted. I will be going, but just reread your post. at about 7 months Doug (son) was taking off on his motorcycle without his helmet. I simply left...really left...for about three days (I did communicate with my husband)...driving home on the route that the girls and I came frequently from Vermont I pulled over and simply sobbed. At home I told Doug that if I caught himie without his helmet, I wouldn't visit him in the hospital nor go to his funeral. I wasn't losing two children in a year. And he NEVER drives if he's had anything to drink. I mean anything. I guess this telling you about the trauma of 7 months was important...oh, Joy collapsed in the middle of a restaurant with her boyfriend. One of her close (but sorta snarky) announced "leave it to Joy to upstage the Pope"...I guess that was JohnPaul II...Weird, but still a touch of "humor" amongst all the tragedy...Off I go..I sincerely hope that this long message will help you in the future days ahead of you. I have MS (and work with it) but it doesn't have me..okay, too trite..but what can you say when you fall down cement steps just before your youngest daughter's wedding..what you say, is "where is my wheelchair" and wheel down the aisle...and Doug caught me...Meredith
  • Carol   Aug 25, 2015 4:17 PM
    I am so very sorry for the loss of your son. How awful for your family! You will be in my thoughts and prayers. Wishing you the very best.
  • Avatar
    kermit12  Aug 26, 2015 12:20 AM
    Susan, I am deeply sorry for the loss of your son. I am the mother of 3, I cannot imagine.

    My soul mate and husband of 13 years ended his life 7/1/05. The pain is endless.

    I'm going out on a limb here and saying something that worked for me, it might not for you (or anyone), but for me it has made a difference.

    I spend 10 minutes every day "out of my head." To me that means I get by myself, and I put on a facemask and earplugs and then a headset. I listen to one of many people on audiobooks who speak of pain and how to cope with it.

    My personal favorite is Jack Kornfield, Phd. His cd/book/audiobook titled "Guided Meditations for Difficult Times: A Lamp in the Darkness." It is available on Amazon and in every bookstore. If you are not a member of audible.com, you can join for free and they will give you one or two books for free and then you can cancel if you want and keep what you have received.

    This man's voice is like being spoken to by an angel, so gentle and reassuring. The first chapter discusses him and Pema Chodran being at a conference in San Fran., and a woman stands up and ask for help after her friend has committed suicide. It eases the ache in my heart to listen to it.

    This book's cover (or cd cover) shows hands carrying a candle. My friend sent it to me from Amazon days after it came out in 2010, and it is the best gift I ever have received.

    Dear Lady, I cannot imagine the depth of what you feel. May you and your family continue to find a way to unite together in your loss.

    My best thoughts for you and your family.

    warmly, Jaime
  • pearl stolzenberg   Aug 27, 2015 12:22 PM
    My dear friend Eileen has had MS for many years more than 25yrs I think.
    She is a published author (even an ebook a few months ago) best person I have ever met in my life I am her friend for last 20yearrs.yesterday the radiologist in her skilled healthcare facility told her there is nothing she can do. You can't suddenly take away her hope
  • icepatineur  Aug 30, 2015 12:36 PM
    All my love and strength to you and your family. You truly have amazing grace. Thank you for reminding us of what is truly important and that MS comes behind those things. It is so easy to get caught up in this horrible disease and to forget those closest to us suffer too. You have put life back in its rightful place. I will include you in my prayers
  • Cache   Sep 4, 2015 11:37 PM
    I am so sorry for your devastating loss.
  • Nadine Redd Johnson   Sep 12, 2015 8:17 PM
    Sorry, for your loss I lost my husband this month will make 9 years. Dealing with a lost put my MS on a back burner for a little bit! I had to hold it together for my son. We both had to help each other deal with the grief. He my husband was my rock. So, I had to get it together to keep myself up! It's been hard but, we are still standing.