“Enjoy when you can, and endure when you must.”
Last weekend was great. Noah and I relaxed, watched a movie, did a few things around the house and enjoyed the glorious CA sunshine. This was done at a slow pace, with intermittent resting and icing for my back. Then on Monday evening out of nowhere, I had a grand mal seizure. I got the ‘wave’ feeling and ‘funny’ feeling in my head. Everything became disoriented and I said to Noah, “I feel like I’m going to have a seizure.” Then boom, a second later, my body was seizing. I momentarily lost consciousness and Noah told me later that my pupils became enlarged, my eyes went in different directions, the color of my skin was pale and gray, and my lips were a bluish-purple color. After 10 long seconds I regained consciousness to Noah’s sweet face in front of mine, and asked, “What just happened?” I remained in a fog and a very disoriented state of mind the rest of the evening. This was the first time Noah saw me have a seizure and it shook the both of us to our core.
As I awoke the following morning, I had hoped it was a bad dream. Once I realized it wasn’t, my mind was flooded with memories from my youth as I had seizures from age five to thirteen. I then outgrew my epilepsy, however seizures presented themselves again when I was 28 year old. A seizure is very scary to endure as you feel it coming and know that you are helpless. Then, when you awake from the traumatic experience and see the look on the person’s face that has gone through this with you, your heart aches for them. I am sorry that Noah had to witness my body having a grand mal seizure, but so thankful that I was not alone.
Did you ever get to a point where life becomes one thing after another? Where you are dealing with so much that your focus becomes unclear. When you find yourself saying, “Enough is enough.” Or maybe, “Give me a break.” As we age, our lives become more of a juggling act. Whether that involves kids, family, sports, and spouses or one health issue after another where you wish you could be dealing with ‘normal’ life issues. As foggy as a seizure makes you, the following day it helps to dust off the cobwebs in your mind and clear your thoughts.
This incident made me recall an appointment a few months ago with a new doctor. Noah was with me and I was providing a list to the doctor of all my health issues. When I was finished, I paused and said, “Oh, yah, I have a seizure disorder too.” We chuckled, as it was funny yet sad to think that I forget to list such a big issue because I am juggling so many other health problems. This week my epilepsy was placed at the forefront of our minds. Although 10 seconds seems like a short amount of time, it seemed an eternity for myself and dear Noah who had to watch my seizure unfold. It may have rocked our world a bit, and will force us to make changes in our routines, but we must continue on, continue juggling. When we live with genetic diseases or other health issues, our juggling act will not always be fun, smooth or constant in its motion. We may drop a ball. A ball may be knocked out of our hands. A new one may be thrown into the mix. One thing I know for sure, after living with PKD and other health issues for 26 years, it is inevitable that health hurdles will continue to present themselves. The sooner this is accepted, the better in which they will be dealt with, the less surprised we will be, the stronger we will become to keep moving forward or else we will find ourselves wasting healthy time. Regardless of what the new day brings, I try to focus on what is right with me and I will do my best to be brave and strong as I strive to find balance with my juggling act, better known as life.
How do you maintain balance in your juggling act?
“Success is not measured by what you accomplish but by the opposition you have encountered, and the courage with which you have maintained the struggle against overwhelming odds.”
-Orison Swett Marden
Valen, once again I marvel at the way you handle each situation that comes your way and that you are so open with all of us. I went through a period of about 4 years where I would have black outs. The drs at that time never called my black outs seizures, but the last one that I had put me in the hospital and the drs there determined that what was going on was some form of a seizure and I was put on medication for about two years. I have never talked to anyone about PKD in all the years that I have know I have it because seemingly NO ONE knew anything about it. I guess I thought if you just ignore it it will go away, which in not a very healthy or smart way of thinking, but thanks to you and your honesty and openess I feel a new kind of freedom and almost relief in knowing that others deal with the same kind of situations that I experience. Do to my sharing I have had two people contact me, that know me, and they too have kidney issues but didn’t have anyone to talk with!!! Again, thank you Valen so very very much for helping so many of us learn to deal with our life situations in a very healthy manner. I will continue to hold you and Noah and your parents very close in my heart and prayers. Blessings to you and yours and keep up the good fight! You are one of the bravest people I know!!!! I love you….xoxoxoxo <3
Thank you for your beautiful and loving sentiments. I hope that your black out issues have resolved. It is scary to have that feeling of not knowing when another may happen. Noah and I had that a lot last week of wondering if I was going to have another seizure. That is a scary feeling.
Knowing that I have provided you with freedom and comfort that you are not alone, that makes me so happy. Thank you for being open and sharing your thoughts as it continues to reaffirm my purpose of all that my body endures, which I believe is to help others. Thank you so much! Lots of love to you! xoxo
Thank you for the work that you do. I hope that it is a long time between now and any future seizure experiences for you…and I admire your ability to focus on not wasting your healthy time periods. You perspective makes a difference for me and as Marsha noted in her comment, your openness has helped me increase my comfort toward transparency as well and have been able to make new connections because of it. Thanks for setting an example of what to focus on when some would rather see a negative experience as an excuse to close their doors in self-pity or retreat from social engagement. You are like that girl in your juggling act graphic…she reminds me of one of the great divas in other traditions with all those arms reaching out…
Thank you for the work that you do. I hope that it is a long time between now and any future seizure experiences for you…and I admire your ability to focus on not wasting your healthy time periods. Your perspective makes a difference for me, and as Marsha also noted in her comment, your openness has helped me increase my comfort toward transparency as well and have been able to make new connections because of it. Thanks for setting an example of what to focus on when some would rather see a negative experience as an excuse to close their doors in self-pity or retreat from social engagement. You are like that girl in your juggling act graphic…she reminds me of one of the great divas in other traditions with all those arms reaching out…
It is an honor to be able to share my story. It has become a form of therapy for me – that and nature. 🙂 I felt alone when I was young and I don’t want anyone else to feel that way. When I endure a health issue, like the seizures last week, everything becomes clearer. I hug Noah a little tighter, take a deeper breath of fresh air when outside. It makes it quite apparent how quick our day/lives can change and what matters. Makes me happy to know that you are being more open. I think that is healthier then keeping things bottled up inside us. Thank you for your support and kindness. Hugs!
I fight PKD by continuing to stay fit, healthy, and strong. I have one kidney left but it doesn’t stop me. Slows me down? I suppose 🙂
Deadlifting 295 lbs and this is part of how I refuse to let PKD beat me – just like you, Valen.
Thank you for sharing your Positivity, Knowledge & Determination! 🙂 I wish you the best of health and hope that one kidney stays strong for many, many, many years! PKD Will Not Beat US! 🙂
It has obviously been a very long time since I have been on the PKD website…I have several reasons for that but I’ll be brief! I was diagnosed @ age 6 with Adult onset of PKD, which would’ve been around 1982….yes, I’m old! Anyway, back then, NO ONE had a clue about PKD, much less a 6 y.o. with it, so I went through EVERY test, medication & even surgery! I was miserable. I was nauseous all day, EVERYDAY, always in pain & constantly dealing with new med side effects, not to mention the depression & many other medical issues that are secondary to PKD! Please remember that way back then only doctors had heard of PKD, so I had people telling me that I was lying, just making excuses so I didn’t have to do certain things or that I just wanted attention & my symptoms were ALL made up! So, somewhere in my mid-teen years, I stopped telling anyone & was determined to be a “normal teen” & just deal with the physical consequences! Yeah, I know, that was super smart…gimme a break I was a teenager! Lol! Moving on…after marriage, I got pregnant & TRIED to do WHATEVER it took so my baby would not be plagued with PKD….I mean EVERYTHING! I had a horrible pregnancy, my kidneys shut down during delivery & that’s when my seizures started…along with many more issues…3 years later…my son has Adult onset & has had the exact same issues & some! I’ve spent so many years…& I’m still trying to CONVINCE doctors & laymen that the symptoms/pain/whatever were very real & were probably due to PKD! It was one thing when I had to deal with the backlash & misdiagnosis, but let me tell ya…it’s a COMPLETELY diffrent story when your baby has to go through it! My son is 14 now & people, including doctors, STILL want to tell us that PKD isn’t “known” to cause whatever he’s complaining of…even when I tell them that I have been through it! I hate that my son suffers daily & there’s really nothing I can do except say, “I know how you feel & I believe you!” He sees almost every specialist @ Cook Children’s Hospital in Fort Worth, which means we are there @ least 3-4 times a month, not counting ER visits, so about a month ago, on our way home from ANOTHER doc appointment where we were basically told there’s nothing they can do, I decided to start researching, hoping someone, ANYONE, was in a similar situation so that I could @ least not feel so alone….AND here we are! I have found so much comfort from your blogs & writings that I have actually started feeling hopeful, for my son AND myself! Thank you for being so brave sharing your experiences!….sorry…that wasn’t brief!
Wow, I am in awe by what you and your son have endured, yet can totally sympathize. I was born in 1983 and diagnosed when I was 10. I dealt with issues during middle school and high school and became severely ill when I began college. During all of it, I thought I was the only one with these issues as I was different than all of my friends. I had a lot of pain, pancreatitis from the pain meds they put me on, and many many cyst bleeds. I have a really dear friend in TX. I am not sure if you are close to her. She lives close to South Lake Texas. I would be happy to connect the two of you. Please know you are not alone. After all you have endured, I am honored that you have found comfort from my blog. Please let me know if there is any way that I can help you and your son.
Thanks Valen for encouraging us all who deal with PKD and multiple issues/diseases and provide inspiration when I don’t know if I can go on another day with so much! Praying for you and Noah!
Thank you so much! Means the world to me with everything that you and your family endure. What your husband wrote on Facebook was beautiful and touched me greatly. I think of you and your family often and continue to send strength and love to all of you. xo
I really understand juggling! I had a bilateral nephrectomy 3 weeks ago ago. I have a husband and 3 very busy children. I was in the hospital for a week because the surgery was very complicated because I had gigantic polycystic kidneys. I also got started on dialysis in the hospital. I know you have been through this process as well. It is so hard to heal and get use to dialysis. I am so grateful for the huge amount of help I have received with people driving me to dialysis, helping my kids get everywhere, and bringing in food (some of which I can even eat). My husband has been pulling double duty and has been amazing! Now as I am starting to be able to move back in to my normal responsibilities it is so difficult! It has to be one activity at a time. Not even one day at a time yet! I just know that each day will be a little better and get a little easier. I also know that I will get a new kidney sometime and life will be amazing!
Good luck to you! I’m so sorry that so many issues keep popping up.
A bilateral nephrectomy is a very big surgery and I commend you on sounding so well and doing so well three weeks post surgery. You are juggling quite a lot right now and I am thankful to hear of the support that surrounds you right now. Sometimes I struggle with accepting help, but I have learned that the sooner we accept the help, the better we can heal and get back to ourselves sooner. I wish you the best on your new chapter with dialysis and sure hope you are able to receive the gift of life real soon. Keep that positive spirit and thank you for your well wishes.
I don’t even pretend to talk about balance anymore! It’s all about integrating what is happening whether it’s health, finances, family, etc. I am sorry about the seizure – I can see how scary it must be for you and Noah especially when you don’t dare to say, “What’s next?” because there are too many scenarios our imaginative minds can latch onto however, you will latch onto the positive, the sweet, the uplifting, the hopeful, the strength and more because that’s who you are. AMAZING. Big hugs to you – I’ve been absent awhile from Facebook but always love to read your blog. Hang in there. Choose hope. Big hugs to you.
Your words are always so uplifting, insightful and make me smile. Thank you for brightening my day. It has been too long since I have seen your sweet self. I hope everything is going well in your world and that you are not working too hard. Hope our paths cross again soon. Big hugs back to you.