So, What Do My Parents Really Think About MS?
What do my parents really think about my MS?
It’s Valentine’s Day and even though this is a holiday reserved for chocolate romantic love or drunk-dialing your ex, I’ve already written about how MS impacts my love life, not to mention my sex life. When you have MS, it affects everyone who loves you. I can’t choose to live without MS, but anyone who chooses me, chooses to adjust to life with MS. That’s love.
When I was diagnosed with MS in my early 20’s, blah blah years ago, I was technically an adult, but just barely. My parents were still my primary support system and were a big part of my diagnosis story. So, this Valentine’s, I thought I’d interview the first people who loved me: my parents.
Before we talk about love and MS, tell me, what qualities do you think I’ve inherited from each of you?
Mom: I think you get your logic and your teachable spirit from me. You’re a learner and a hard worker.
Me: I’m also a blabber-mouthed, reckless spender. I believe you taught me the valuable lessons: “It’s not gossip, it’s information” and “It’s just money. You can get more”.
Mom: You love things, you definitely got that from me, and that joie de vivre. Life is exciting. Life is beautiful. You got your looks from me. And your sense of style, of course.
Me: Right. “The price of beauty is pain”, and “If you can’t hide it, decorate it”.
Mom: Style goes along with knowing who you are. It’s not just being fashionable, it’s like you know who you are and you express it outwardly.
Dad: Well, you get your sense of humour from me. I think you get your compassion from me too.
Me: You once gave an apple to a woman with no teeth.
Dad: Yes. And she told me to stick it up my ass.
It’s been 19 years since my MS diagnosis. What do you remember about that time?
Mom: I was worried you’d had a stroke. MS surprised me. You seemed totally hopeless, you were sobbing. I was in denial and trying to get you to deny it. It was a shitty day.
Dad: I have to confess, I’m quite embarrassed because I did not accept it. When you started telling me the different things you knew about MS, I just turned myself off. I don’t wanna hear this because my baby hasn’t got this; she can’t possibly have this terrible disease.
Me: When did you finally accept that it was MS?
Dad: It was a gradual acceptance. I had to listen to you.
Mom: Well, seeing it is different too. When you came home from that vacation and I saw you walking, it’s not here anymore (points to head), it’s here (points to heart).
Dad: The first time I saw you struggling to walk it was like a punch in my stomach.
What’s the hardest part of being the parent of an adult child with MS?
Dad: The helplessness. I see what you’re going through, and there’s not a damn thing I can do about it. My one strength, I think, is that when you’ve been in a real mess, and I can get you laughing.
Mom: I don’t feel helpless. I feel like there’s maybe some things I can do. Like talking to you when it was time to catheterize. Of course, sometimes I go overboard with the advice. But the hardest thing is that I feel I have to really look after my own health so I can always be there for you.
Me: You feel like you have to live forever so you can look after me???
Mom: No, it’s not that. It’s just, I can’t cure your MS. I can pray about it and that’s what I do. But I would do anything for you that I can do. Like, when you needed draperies and I sewed you 14ft wall to wall curtains. It’s silly and it doesn’t make sense.
Me: So, you wanna stay alive so you can make me fruitcakes when I’m sad?
Mom: Pretty much.
Me: I accept that.
The Banker: Do you have any fruitcake now?
Dad, what’s the hardest part?
Dad: That MS is devastating. And it’s far more widespread than I ever thought.
Mom, you already knew a lot about MS from having been a nurse, but what have you learned since my diagnosis?
Mom: Well, how much MS has changed medically over the years. And I’ve learned how expensive it is; how horribly financially devastating it can be.
Dad: I remember the first time you were told there’s a new drug and not everyone can get it, but you’re gonna get it. So, everybody’s thinking that’s the answer. In my heart I’m thinking, is this the thing? Is it? And then it turns out it wasn’t, and then you end up going for something else, and something else, and then to Poland for God’s sakes. All these terrible things you’ve gotta go through. You’re not just going to Poland for the perogies.
Me: That vodka tho…
Mom: I believe in miracles. There’s an answer out there. We don’t know what it is. I am hopeful. I’ve also felt guilty. Many times I’ve thought it’s from my genes or that I didn’t breast feed you. It’s true.
What do you think is the biggest misconception people have about MS?
Dad: I think people in general have the same opinions I had. They don’t know what it is, so it can’t be that bad. If you say someone has cancer, people know what that is, and the reaction is that there’s nothing worse. But, I’m sorry, there are other things besides cancer, and that was a revelation to me as well. One thing that pisses me off is when people say “Well, how did she get it?”
Me: Like, they think it was lifestyle factors?
Dad: Some people, yeah. Or they just think you should be taking vitamin D. Or they say “I know people that have MS and they’re getting along fine”.
Mom: I think the biggest misconception is that people who don’t have a good course of the disease, it’s because they don’t follow the right diet, or so-and-so has a friend and they have MS and they’re fine.
Dad: I’ve heard that many times.
Me: People say that to you guys? (My head explodes as I realize I’m not the only one subjected to this kind of micro-aggression bullshit.)
Mom/Dad: Yeah/Oh, yeah.
Mom: Someone said to me recently that you should be doing Tai Chi. And that there’s no word for MS in Chinese medicine; that there’s something we’re doing wrong here.
Me: Oh for fuck’s sake.
Dad: It’s ignorance. And that was me, initially. Sadly, I know a hell of a lot more about it now. I’d rather be one of the ignorant ones.
What advice would you give to parents of someone newly diagnosed?
Dad: Listen. Cause they’re gonna have a lot to say, and the more the disease progresses, the more they’re gonna have to say.
Mom: Try to understand what your child’s perception of the disease is. And understand that there’s going to be a whole lot of choices along the way, treatments to take, and things like that. I think the biggest thing is to continue to see them as who they’ve been all along and support that, and not let them collapse under the weight of public opinion or misconception.
Dad: I agree and you do a very good job, because, and I have to get this out there, you know who you are. And you know what you are. And the fact that you’ve got a disease, that doesn’t change it. “I’m Ardra Shephard, get out of my way!”
photo: Alkan Emin
Mom: And when young people are diagnosed, maybe they don’t know who they are yet, and to me that’s the biggest danger.
What’s the most important quality someone with MS needs to have?
Mom: When I was a nurse, a lot of nurses thought people with MS were impatient with them. I think they had a right to be. You need to have a fighting spirit.
Me: To be able to advocate for yourself?
Mom: Yeah.
Dad: I see what you do, I see how you handle this, and I ask myself if this were me would I be doing the same thing?
(Mom shakes her head vigorously. That’s a hard no.)
Dad: I’m extremely proud of you, because not only is this (blogging) helping you, you’re helping so many others. To me, that’s the most important thing. That, and I wish you’d stop using the F word every third sentence, I can’t show this to anybody at church.
Mom: It’s because you’re brave enough to be honest. Society’s taught us not to talk about these things. I love reading people’s comments.
Do you still worry about me, or do you feel like on some level you know I’m gonna be okay?
Dad: Seeing you sitting here, my heart tells me she’s gonna be fine. But when you get up, I’m gonna watch you walk to the door and it’s gonna shatter that dream. She’s not gonna be fine, this isn’t going away.
Mom: When you’re here we’re talking to Ardra the spirit. When we see you leave and struggle to the car we see your body and we cry.
Me: Oh good lord. Who invited Sarah McLaughlin? I don’t want you guys to be sad, or feel sorry for me when you see me walk…
Dad: Well, I can’t help it. I don’t feel sad or sorry for you, but I feel angry about what that is doing to you.
Me: You keep pointing to the rollator, but that’s a tool…
Dad: I know that, it’s a symbol for me. It’s not the rollator; what I’m trying to say is what the disease is doing to you.
Me: I think of my walking differently now. I feel grateful for all my crooked fucked up steps. I’m not staying home or checking out. If my walking days are numbered, I don’t wanna waste them wishing I was walking like I was three years ago. I’ve done that. It’s exhausting.
Mom: I totally agree with that.
Me: I don’t want people to look at me and feel sad. Or pity. I’m doing stuff. I’m traveling, I have a great life.
Mom: You don’t have to convince us. The invitation to answer your questions makes us a little more open. You’re asking us how we feel and you’re our little girl.
Dad: That’s the bottom line.
Mom: And you’re still kicking ass.
I didn’t look back to see if they were crying when I left.
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Oh my goodness – what a wonderful gift you have given us in sharing your parents. Norma and Jim were so candid and they sure know what gifts you got from each of them! In many ways it helps to explain you knowing who you are and having confidence as you mother said to Kick Ass. I love that you get up, get dressed, get “extra” and get going. I am 67 with 19 MS years behind me and you inspire me. I understand your dad wishing you used the F word less – I can’t forward your blog to some of my friends – but that’s ok – because I love your stories – not only do you encourage me but you make me laugh – I think you are funny AF.
Thanks for reading! Sometimes the f-word is le mot juste!
Yes. Therapeutic profanity I’m a believer in it.
Great article Ardra!
This is beyond any doubt perfectly written! I needed this today as I am newly diagnosed. One year ago tomorrow February 15th I had a flair up that changed my life. When your mom mentioned the thought of you having a stroke it was the exact same situation. Thank you for being vulnerable and bringing light to the situation. I’ve learned so much about myself over the last year and having a role model and someone to look up to like yourself makes it easy to fight and be transparent with this. To my MS Fighter Sister, Thank you!
Thanks for reading, Katie. Be good to yourself today (your dx anni). Buy yourself a present and toast to the fact that you made it through the first year. xo
Good article, Ardra. Thanks for reposting it.
You are blessed to have such understanding and supportive parents. I was diagnosed 26 years ago when MS was called “the crippler of young adults.” Generally, people did not know much about the disease except that it would cause a person to be in a wheelchair and die. My parents’ attitude was to tell me to hide the diagnosis from friends and family. They were almost ashamed and felt that my having an illness reflected poorly on them and their social circuit. I felt sorry for myself for a while and cried as we all do but then said fuck it. I can still do a lot of things and purposely challenged myself. I have participated in an outdoor activities, social events, and worked for 32 years as an attorney.Society’s outlook has changed over the years and I am not ashamed or afraid to tell anyone I have MS or to ask for help if I really need it. Technology for people with mobility issues has also greatly improved my life and I believe more advances will be made in the future that will help people like us. I think attitude has a lot to do with how one deals with their MS and I admire you, Ardra, for your spirit and determination to battle the challenges that MS puts in front of you every day. Go have a wonderful Valentine’s Day and I hope the Banker indulges you with champagne, chocolate and whatever else your heart desires.
Thanks for sharing some of your story, Yvette. A lot has changed in the past 20 years, but there’s a lot more to be done.
We had a lovely V-day, and I was spoiled with all of my favourite things.
Love this! One thing that I’m grateful for is that I didn’t officially get dx with this shitty disease until later in life. Both of my parents have passed and didn’t have see their spunky, fun loving daughter turn into an exhausting, wobbling, glob of forgetfulness in a puddle of piss!
The bad side of getting it later in life is seeing your children struggle with a mom who went from someone who could do anything, to someone who needs help cutting their dinner. To have grandkids is my greatest joy, but it breaks my heart that they will never remember a grandma who could walk, let alone running around the yard with them.
So for now I say Fuck You MS!!!! I want my kids to always see me as strong, no matter how weak my body and brain becomes. And to my grandkids, I will always be their funny and fun loving Gramma Gigi who is full of sass . ❤️❤️❤️
I don’t have kids, but I am an aunt and I often think about how my MS affects my nieces and nephews. So far, they are all thoughtful, compassionate kids.
I am felling encouraged after seeing your comment to Ardra – your story is ME. Right down to Gramma Gigi! I have a fun spirit and did run around and jump on the trampoline with them when I was 58! No more … I was just diagnosed 4 mos ago and still processing. Your comments are what I am going through. Except my mom is still alive, and I can’t tell her!! The rest of my family knows, but she would NOT handle it well. She is a nurse and knows … Thank you for commenting and making me feel “OK” about MS.
Tomorrow I will find out which type of MS is in my future. Ironically, today would have been my mother’s 95th birthday. In some ways I’m glad that my parents aren’t alive to hear the diagnosis. Am I scared, HELL YES! But I need to put paid to this whole thing. I went to 4 doctors before I finally got a diagnosis. Most blew me off…..I’m fat, I need to diet, I’m lazy, I’m a hypochondriac, you have a tumor on your inner ear nerve bundle, you had three TIAs. You get the picture….
Apparently I’ve had MS for a while.
My favorite line was, “I rolled up into a ball crying on my bathroom rug.” I want to do that, but I’ll scare my husband. Anyhow, thank you for your remarks. Thank you!
Thank you, thank you, thank you. I am the daughter, the sister and the mom of people I love deeply who have lived and are living with MS. I understand the feelings very well. It was good to read your questions and comments. I appreciate what you do.
Thanks for reading Cassandra. It is scary how common this disease has become.
Ardra, just when I think you could not be more perfect, you write a piece like this. Where are my kleenex…
Check your sleeve. That’s where I keep mine.
Audra,
Love your title “tripping on air”. I don’t know how many times I was ask what I tripped on? Was it a painted line on the street? Also your use of one of two of favorite F four letter words. Free and fuck! Tried to tone my marine mouth down but that word seems to say it all. Your parents talking about the disease hit home. I had my formal DX late in life – 58. Three years later my 40 year old daughter was Dx’ed with the nasty bastard. Her DX was harder on me than my own for sure. I love your posts.
You have a great sense of humor! The best to you and thank you for being so personal and honest about this f*ucked up disease!
Thanks for reading and for commenting. If there was ever a time for strong language, it’s when talking about this effing disease!
Great article, as always Andra!
I’ve gotta say that I have been living life with MS and I’m still getting around . The hardest part has been when my 35 year old son was diagnosed with MS last year. This is the last thing I wanted to pass along to him. ? Good thing we are both warriors!
I wouldn’t wish this on my worst enemy. I can only imagine how hard it must have been for your son to get dx’d. I’m glad you have each other.
I’m deathly afraid that my 40 year year old daughter or two young granddaughters will get MS. Stupid nasty disease!
I could not adore you more. Your interview with your parents was amazing. I love how open they were. I feel like my parents would answer in a very similar way. I know they are devastated that I have this disease, but they know I am a strong boss bitch. and that I’ll be fine. I’ll just need a lot more help and entertaining! I’m trying to start my own blog and I love to read your blogs. You’re so insightful and so inspiring. ?
Thanks for reading, Kelly. Please keep us posted about your blog. I’d love to read it!
Love this post, so insightful to sit both parents down and have a chat. Their wisdom and knowledge are astounding 🙂 I did a similar interview but separately, I think this is a much better idea! Will link it up to my blog 😀
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This was so good. Thanks for sharing.
I really loved this post! I think it’s my favorite so far!
I am very close to my parents too. I have a mother (She is also very extra) who takes care of her heath like it’s a job so she can be healthy for as long as she can in case I need her. She would literally bake 3 layer cookies for me at midnight if I am having a particularly hard time (I’m saving this for a really really bad day).
But what I mostly want you to know is that you blog has helped my relationships with my family concerning my MS tremendously. After finding your blog I asked my loved ones to read it too. My MS has been a 26 year journey & YOUR writing finally helped them understand what I had been trying to convey for a long time…
Yes, I have MS but it’s still my life. Let me live it. Let me overdo it. Let me do it my way. And for fuck sake please keep laughing with me every chance we get.
Damn, Nora. This made my day. And I don’t think I’ve ever had a 3-layer cookie, but I suddenly feel like I need these in my life.
xo
A.
This is fantastic! I know I can go to my parents/family/spouse when I have reached my limit or just want to complain. But it is still hard. MS isn’t a conversation that is had often. I love the idea of “interviewing” people. I just might steal this idea!! You know, when I finally decide to post on my own blog regularly. ahah! This is a great way to get people talking. Thanks so much for sharing.
I’d love to read it if you do!
OMG, finnally someone said it all my sister in law and best friend Crystal has MS and went diagnosed for so long I herd all the it was her life style coments,and she just wants attention, or its not as bad as she’s making it, and it’s an excuse of why she’s not where she should be in life all the embarrassing days out and she can’t hold her bowls or bladder and the i cant stay the night excuses cause she might wet the bed but the one thing I know is she takes all the right vitamins and eats and drinks all the right things and all the trials of new medicine and finnally to hear someone speak her truth you are doing great things in minds and hearts of MS men and women everywhere
Your SIL and bestie are so lucky to have you on their team! Thanks for reading.
You are an inspiration to me and your parents sound beautiful, your mum sounds just like mine. Your are truly blessed. My mum always says “if I could take it from you I would”. Crying just writing that. Your parents have really opened my eyes to how my own family would be feeling. I have a husband and two children who are teenagers but still everyone sees and everyone feels helpless. I had the “ooohhhh your just looking for something to wrong with you” and felt maybe it was just me and then. I am 12 months post dx, I, like you was being rushed to hospital every second week with the “it is a stroke” like symptoms and I had all the hallmarks of a stroke! But no, 2nd last trip to the hospital I was numb from the waist down and that is when testing stepped about 50 notches! 12 months on an now I am in a relapse of “sitting at work and I can smell SHIT, why can I smell that”, well I was physically sitting in my own toilet in my underwear, so needless to say I am a pile of poo & pee at the moment! Not to mention “the excruciating pain in my back”. I read so many different stories and how others deal with this shitty disease, most of the time they are even more depressing than my story, but I know I can read your blog and it is uplifting and makes me come to terms with “I have this, what am I going to do about it?” At the moment keep my underwear clean but once this passes it is another experience and downer that I have actually lived. I love reading all your blogs and the fact that you can make a joke at yourself, we all need to laugh at ourselves most of the time otherwise it just gets too hard and this dreaded disease wins. Keep on keeping a smile on my dial and keep sending those positive vibes even though sometimes you are probably feeling like absolute POO on the inside and out! ❤️
Thanks for reading, Emma, and for your kind words about the blog. It’s good to know we’re not alone in this shit show!
Dear Ardra, Your vulnerability is so poignant and beautiful. I love how you communicate your truth. Your feelings are very relatable and you SAY what many others THINK. I often laugh out loud while reading your posts. Thankyou for sharing. ❤
A truly great interview with your parents! Thanks for sharing!!
Your dad is absolutely right – you are helping so many people!! Thank you!!
Ok. Wow. Im not just a tripper ..im also a mom to a tripper. And this hit me pretty fucking hard. My son is 27 and has a different set of symptoms and is in denial land. Which honestly…cool with me! I wish my parents were like yours. I truly do.
With that being said..my son has an awesome Mom because Ill know stuff. And I hope Ill have the good stuff he will need ..having tripped long before him. That also leads to the guilt of definately having “gifted” him with MS. Ugh. Need chocolate and wine for the guilt that goes with that shitshow of feelings.
I LOVED this Ardra. It hit hard,but thats why it was so good.
Keep trippin …i know i will.
Thanks for reading and for sharing your story, Maria. Your son is lucky to have you as a resource and a support. Drown that guilt in wine and chocolate.
xa
Hi Audra,
Thank you for writing this. It was an awesome read… as I sit here trying to recouped from a hair wash day. LOL
You are very lucky to have such beautiful and amazing parents. I was diagnosed with MS late last year, although I believe I’ve had it for awhile but chose to deny it. I am understanding this thing more and more each day through research and wonderful blogs like yours. I’m encouraged by your blog knowing that all these crazy things happening, that I am not alone.
Anyway, thank you for being you. Drop all the F-bombs you damn well please, cuz MS is some fucked up shit! And as you often say, I will keep on trippin’… Well, cuz I do!
Thanks for reading, Patty!
Wow this was fantastic! It’s true you help so many! And you share so selflessly! Thank you and your family❤️