The Migraine Life: Firsts, and Lasts

The joy of doing something exciting for the first time has occupied much of my life in the past:

My first job and first home.  My first dog, cat and horse.  The first time watching our race horse win her first race was such a thrill!  There were also my first blue ribbon and first trophy.  First trip overseas.  First days of school.  First days in a new home.  My first child.  Watching that child take his first steps.  A first taste of something wonderful.  My first time helping a mare give birth and watching that foal take his first breath, make his first whickering sounds to me, and stand for the first time.

Due to my progressive Migraines and other health issues, I realized recently that instead of firsts, I have been doing things that, as I stand there in the ready to experience them, I think to myself: “This may be my last chance to do this.”

Even worse is doing something I love KNOWING this is the last time I will do it.  No matter how much I savor every second of those experiences, I can’t get enough.  It’s always over too soon.  I always feel like I’ve missed some milli-second that I will regret not having in my memory banks.

I realize that firsts and lasts are a normal part of our life cycles and growing older.  In a few weeks I will be 49 years of age.  To me, the term “older” didn’t apply until you hit at least 70 or 75. But, here I am at 49 doing things that shouldn’t happen until I’m in my seventies or eighties.

I am not ready to be experiencing so many *lasts.*

In my family, life has hardly begun by this time!  My mom jumped out of a perfectly good airplane for her 70th birthday, and my grandparents took a trip around the world in their seventies.  My dad took his first balloon ride in his seventies (where he saved them all from crashing into power lines) and both parents went to Norway for the first time at that age.  A good friend was bungee jumping for the first time in his eighties!  Another learned to scuba dive and surf in his 70’s and 80’s.

All my life I was told, “Wait until you’re old enough.  You can do it then.”  I have such an adventurous spirit, and these crazy stunts are the things I have waited my whole life to be able to accomplish!

First there was school, then marriage and kids, then illness.  “Later” never came.

Massive and repetitive Migraines and a sense of self preservation has had me thinking lately that there have been precious few *firsts* in my life lately, but a lot of *lasts*.

The lasts I am reminded of each day of my current life, cut deeply.  They involve the end of a dream – my successful Arabian horse farm, which I very reluctantly closed due to my health.

After each horse was sold, I had to lead them into a trailer.  Say my last goodbyes.  Touch them for the last time, smelling their unique, clean sweetness and listening to them nicker to me for the last time.  Then I watched as each one drove to the end of the driveway and turned either left, or right.  I listened as I heard them call out as they drove out of sight.  For the last time.

I would never see them again.

My last mare was pregnant with a foal I had worked a decade to help her produce.  We had been through so much, she and I.  She had even scarred and broken my face in an accident, and stuck with me as I worked to regain my confidence after the injury.  She was very rare – literally the last of her kind, and I loved her like one of my kids.

I had those same experiences with her, but as I said goodbye to her, I also had to say my goodbyes to the foal moving within her that I had dreamed of and prayed about and worked for so long.  I remember hugging her middle for the last time, feeling the colt inside her dance around in response to my voice and my touch.

Thanks to the failure of my body, it was the last time I would have any contact with either of them.

Thankfully the new owner understood my soul, and she allowed me to name our beautiful colt and produced a video of him with the words “I knew I loved you before I met you.”

Each day I experience another *last* or potential *last.*  I experience precious few firsts anymore, and this saddens me.

I am still working on finding a good preventive, but twenty years of being chronic is tough to overcome, and I know it could take years yet.  I’m also realistic.  I know I can get better, but better is not a cure.  It can’t give me back the years I’ve lost.

Some days I don’t handle it well.  I get discouraged and find it difficult to remain my normal positive self.  I try to think, “What is something amazingly wonderful about experiencing this – even if it’s for the final time?”  I tell myself, “You now have a memory to cherish and hold in your heart, which few will ever experience in their entire lives.”  I tell myself, “Remember how lucky you are.”  I remind myself “You’re living on borrowed time (I nearly died after a medical mistake several years ago) so every experience is a bonus.”  I try to turn those experiences into celebrations instead of funerals.

I wish it helped more.

I have, at times, become a jealous person, which is completely against my nature.  I want those experiences that others around me are enjoying and taking for granted.  I’m tired of sitting in the shadows and watching others do what I so desperately desire for myself.  I choke back tears when family and friends try to convince me to do something I can’t possibly do and must turn down.  I feel resentment when those I love try to bribe me to do things I can no longer experience, or guilt me into them, as if I wanted to be sitting in the dark inside the house all day long.  When my hubs tells me “You shouldn’t do that, you’ll be in trouble tomorrow” it makes me want to rebel and do it anyway, and too often I give in and regret it later.

And, I know I am not alone.

Maybe you can help me…

What are some of the *lasts* that you have experienced?  How did it make you feel when you realized it might be the last time you experienced it?  How do you deal with jealousy that occurs when you can’t participate and the sadness sets in?  How do you turn those lasts into celebrations instead of funerals?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (7)
  • Ann B
    6 years ago

    Ellen, that was eloquent and beautifully written. I am sitting here with tears in my eyes. The video and accompanying music were heart-rending.

    My current *last* isn’t as poignant as giving up beloved animals or a job in the legislature, but I am stepping down from our local swim team board and giving up my position as meet scorer. The time and people pressures and oppressive heat and tension of scoring a meet are just too much. I always wake up with a migraine the next day. My children have been on swim team for 11 years. Problem is, my youngest is still eligible to swim for another two seasons, and I don’t know how this will affect him. I don’t feel jealous or sad, but guilty. This from other parents who don’t understand what I live with and say “everyone has to pull their fair share.” So there will be the loss of social interaction and the satisfaction that I am making a contribution in the community.

    Like others have posted, I also am unable to drive long distances, which means I can not visit my 5 granddaughters unless my husband is able to get time off and drive. Now that does foster jealousy, because the “other” grandmothers are not thus afflicted and see the grandchildren much more often. I also have a deep sadness that I am not a part of their lives in the way that I would like to be. I can not answer how I deal with this, because I don’t very well. Maybe someone here can help me.

  • taralane
    6 years ago

    Dear Ellen – What a beautiful post to share with us all! I have had to say goodbye to my horses as well, and that life which is beyond my grasp right now, and probably forever. My “lasts” are also with horses, and my creative artist self that has no place for me now that this chronic illness has so overcome my every-day life. Even if the pain stopped, I don’t know if I could get back the strength needed to continue in my former life (lives)- I have lost so much and am about to hit my 64th Birthday. My body is not what it used to be, and getting it back seems like another mountain I am not ever able to climb. I am feeling my mortality so much these days – not like my friends who are out doing so much, and with whom I don’t speak much because I cannot join in, and I am left by the wayside, unable to participate, and they unwilling to understand fully my situation, and cutting me out of their lives. I am with you 100% on that one.
    But, the fighter in me, like you, sometimes needs a rest too, and after a few days of giving in, picks up and keeps going for the 1,000th 1,000,000 time to fight anew. Like Don Quixote, we march on, greater fools that we are, towards a time when there may be a cure for what we have, and relish any moment we can find of peace within our lives until then. I want more, but am satisfied by less. I have understood that “more” is only a relative term, just like “good” & “bad”, “up” & “down”. I am learning to let go of these terms as just another way I let myself be ensnared and punish myself for something I cannot control. Every very moment can be cherished if we let it. I look for things I can do, not for things I cannot. And I do those.

    I, too, long for days gone by, but I am too much of an active person to dwell in memories of what was, or what might have been. I choose instead to look and what can be within my smaller world and find creativity and comfort in that, “choose” is the important word here.

    I hope this helps.

  • margaret fiedler
    6 years ago

    Dear Ellen, Read your story and feel your pain, your joy, your constant battle with this misunderstood disease. I have had Migrains since I can remember, became chronic when I had a surgery that went very wrong resulting in two more surgeries and sepsis. I now follow your path. spending 4th of July in bed, which involved passing, on having my two grandchildren , children of my son who was killed a few years ago. So sad for them to have to leave. Moments Savored.. Moments Lost… that is my story.the one exception, I have made it to 72. my family genes are much like yours,so to be like this seems so unfair. Some days it is a struggle to control the anger and resentment sometimes directed at those I love,not just because of lack of understanding but the lack of searching out and listening to information of what a migraine feels like, even before I thought others knew, I said it is so much more than a headache, the pain in the head is the last to happen then with days of recovery to follow. I have passed on the opportunity to join friends with outings or travel, most feel I am shunning them and just keep their distance. I feel as tho I am rambling, but since finding this site recently, had no other support system or proof of symptoms. your letter is beautifully written,and an inspiration to myself and im sure so many others. To know there are others who understand, even if it is across the world.. to love ourselves and to use our downtime to try to revel in those precious memories we have made on our Free days. God bless you for your commitment and sending prayers your way for a symptom free day. again a special appreciation for You.. Sincerely Marge

  • Diana-Lee
    6 years ago

    Oh, Ellen, my beautiful, amazing friend. What a wonderful post. This is something we’ve talked about quite a bit, and I’m so thrilled you wrote about it. I love you!

    Leaving my job at the legislature is the biggest potential “last” and the most painful. It took me years of distance and therapy to even see the Capitol building without sobbing.

  • slhart
    6 years ago

    I recently posted about feeling the need to take a camera everywhere I go because I fear not remembering special events (firsts or lasts for that matter) Too many medications have robbed me of special memories. It is one thing to participate in life and another to just show up. Thanks to medication I can usually show up and thanks to medication I may not remember being there.
    Yesterday I woke up without a headache for the first time in years. I enjoyed that feeling for about 1 hour as I just laid there doing nothing. The headache soon appeared from nowhere and I spent the day thinking of all of the things I should have done in that headache free hour?? Hopefully it wasn’t my last
    I have a saying on my living room wall that says “Life is not measured by the breaths we take, but the moments that take our breath away”
    Thanks for posting this story as a reminder to cherish every moment……Hugs

  • Lene Andersen
    6 years ago

    You just made me cry into my keyboard before breakfast. This was so beautifully written and your story of saying goodbye to your babies was heartbreaking.

    The theme of lasts and loss resonated very deeply with me. I’ve had a lot of lasts because of rheumatoid arthritis and fibromyalgia. Two things have helped me. One is that in 2004 I had a huge flare of my RA and was pretty sure I was going to die. Biologic medications gave me back my life and it has had a profound impact on my perspective on life. I’ll never be back to where I was before the flare and in many ways am more limited than I’ve ever been before. Still, everything I experience is a miracle in so many ways. I also work really hard to focus on what I have, not what I don’t have. I’ve realized that I need to apply a lot of mental discipline to this aspect — if I start thinking about just one thing I’d like to do (but can’t), it’s a guaranteed spiral into getting lost in what I call the “if onlys” and sadness.

    And one more thing… I also took myself a little. These travel a lot and loved it, but haven’t been able to travel for almost 10 years. I don’t say that I can’t travel anymore, I tell myself that I can’t travel at the moment. If there’s anything I’ve learned from my experience of getting back my life, is that you never know what will happen. And I will hold on to that.

  • beniceshaw
    6 years ago

    Tears came to my eyes reading this because I have felt this way for a long time. Some family members do not understand what it means to be chronic. I cannot travel even a few hours in the car anymore. I gave up thinking I could hold down a job a long time ago. I became chronic 26 years ago. I turned 49 this year. So over half my life has been like this. Yet we keep going. You are an inspiration, and at the same time you remind me of the things we have lost due to this disease. I hold on to the positive and loving moments each day. I am glad you got to live your dream even if it wasn’t for as long as you wanted.

  • Poll